My daughter Keisha looks
like any other happy little girl, and in many respects she is.
In July 2000 she was diagnosed with Cerebral Palsy (CP), aged 22
months.
I had a feeling something
was not quite the same with her just a few hours after she was born. She
would twitch every few minutes. The Health Visitor described her as
jittery but because she was alert and interested in her surroundings,
she was not worried. I later discovered these twitches were small
seizures. The doctors always said
they were nothing and that she would grow out
of it, but they were wrong.
At three Keisha could not stand unaided and her legs still have a tremor, mainly
first thing in the morning. Her feet do not flatten on the ground
without Splints they twist inwards. She gets around
using a Posture Walker
and a wheelchair.
Keisha gets frustrated because
she cannot do all the things she sees other children doing, but her
bubbly personality bounces her right back. She likes to do as much as she can
too - she is very determined and independent and I'm glad, even though
at times that itself is frustrating for me. It means I do not worry
about her as much as I would if she wasn't! Her sister Aisha,
(who is now 14) helps out a lot.
Further
to the update in September Keisha now has a Statement of Special
Educational needs (see below). This is reviewed annually. There are
various 'bands' which relate to the amount of funding that can be
provided. Unfortunately, in our case, transport has not been provided as
there is a school just across the road that I could have sent Keisha to.
What the Statementing team did not take into account is that this school
does not have appropriate access. This means that we are the mercy of the
bus drivers in the morning some of whom are great and lower the ramp for
her wheelchair without any fuss, but the majority of them are not quite so
helpful.
Keisha has now started full time 'mainstream' school. The
school nearest to me did not have what i consider to be enough free space for
Keisha to feel comfortable moving about with her walker. She doesn't use it all
that much now, she really is trotting everywhere, although by afternoon she's
usually ready for her walker at school. She is such a mischievous little thing
she is always running away merrily telling everyone she passes that she loves
them! Although sometimes I do need her to come when I tell her I let her run for
I never 'knew' I'd see the day she could.
Speaking of schools, your Health Visitor, Physiotherapist
and your Council's education department will be able to get you details of
schools for you to choose from. I visited a few before selecting Keisha's,
talked to the staff and checked out the layout of the school in terms of access
for example. The head spoke to me about getting a statement for Keisha, and gave me the address to write to to get the process
started. It involved filling in a reasonably simple form click here to see a
sample, the nursery or school also fill one in.
Keisha had a
Percutaneous Lengthening to the Achilles and Botox
injections on 4th December 2002. The Botox released the tight muscles in
her hamstrings. She stood up for the first time two weeks after the
operation aged 4½. It was a very exciting time.
Click here to see photos of the procedure up to anaesthesia and read about our
experience.