Mums story part 3
Howard turned 19 this February, and things have slowly, but surely, moved on since
my last update.
On the 16th October 2012, almost a year on from his Stroke, Howard left the RNHRD
in Bath on a bright and sunny day by ambulance. I joined him in the ambulance with
Jezz following behind by car. The car was stuffed full of all of Howard’s stuff! It was
a sad farewell to some of those special people that cared for Howard and it was
scary too, even though it was something we desperately wanted to happen, the fear
of the unknown, the thought, will the grass be greener? was strongly in our minds.
However, after some teary farewells we were on our way back to Devon, to a brain
injury unit in Plymouth, full of hope and promise that we would get our boy home at
I had fearfully sourced what I considered to be the best, of little choice to be honest,
for somewhere for Howard to go before coming home with us to our bungalow. This
process is a very hard one to deal with for someone you love, you so, so badly want
to get it right for them. This was a set up that we had to agree to because they
would not allow him to come straight from a hospital directly to his family home. This
was somewhere nearby for us, with me working in Plymouth, it meant Jezz could be
at home with me to help with the next stage. Howard was to have a small flatlet of
his own with a 1:1 team of staff to care for him. I had envisaged a couple of week
period before he would be back with us, but the reality of this was not the case, not
at all! Even though we had been advised about the required adaptations to the
bungalow, and the work had been done by the council, the hoist had been put up,
the doors widened to allow for Howard’s wheelchair access, a ramp had put in to the
front door and a wet room put in, it transpired, after Howard came for a home visit
with Jezz, myself and his carer one day, that the bungalow was far from adequate for
his needs! We were gutted, I mean, seriously gutted! Then different OT’s came and
the realization that what we had been told that the property was really good, as good
if not better than we could expect and that we were very lucky, turned out to be just
not big enough. Our hearts sank. They had all got it wrong. Howard could not
come home to our bungalow in Chillington after all.
Time went on.
There have been times when people would assume that because Howard cannot
speak or move that he hasn’t got a mind, a thought, feelings or an opinion or any
idea of what is going on around him. Some people will not communicate because
they are afraid of the technology he uses, because they cannot understand or see
past the visual impression they get.. They don’t take the time, they don’t read the
details, they don’t do the best for the “person”. They tick boxes and think that, that is
doing their job. These times made Howard very, very unhappy. There have been so
many times where we have felt utterly useless and powerless to make anything any
better for Howard. Let us all never assume anything about anyone, we should take
time to talk, to ask questions, to allow people to share their thoughts and opinions as
we would all have others do for us.
Imagine. Imagine not being able to move or speak, to scratch your own itch!.
Imagine not having any control over what is going on around you. Imagine how
desperate we were to get Howard out of an institutional setting and into his own
home. Imagine how difficult that whole process would be and was.
Well, two Christmas’ passed and then, after trying to get Howard his own mortgage,
which we did, quite successfully, only to find it was not enough money for him to
purchase a property the size he required in the location he required to be back
home, something wonderful happened…..
A group of four people set up a trust for Howard. The idea was that when any
medical advances became available for someone with an injury like Howard had
suffered, that they would pay for him to have treatment to “re-
him to move and speak again. They would send him anywhere in the world that he
needed to go. We did not find such a thing and times were hard. Emotionally for
Howard everything was bad. He hated being where he was and he wanted more
than being stuck in such an institution, well, the trust made a promise to him before
the New Year 2014. They were going to buy him a house, in Kingsbridge, where he
wanted to be, and they would have it adapted according to Howard’s needs and he
could rent it from them. I pursued the idea of the Individual Health Budget for
Howard and we got the go-
time, and nobody seemed to know what this meant or how available this would be for
us. Well, I got there in the end. We could now look to recruit Howard’s own
handpicked team, who should fulfil the criteria as set out by Howard and look to a
new and fulfilling life.
But this is not all…… Howard, despite what the professionals
told him, persuaded us to enable him to eat food orally again. His speech and
language therapist was not really into this idea at all, no get up and go, no
enthusiasm or vision, but Howard fought against her. Jezz explained all the potential
problems to Howard and having made Howard aware of all of this, Jezz agreed to
help him. Bit by bit Howard has eaten all of the things he missed so terribly – the
joys of chocolate, pizza, delicious cakes, crumpets, ice cream, jellies (about 20 a
week now!!) bacon and egg, curries, cottage pie, apple crumbles (made by granny)
fajitas! You name it Howard has eaten it, he has come on leaps and bounds. No
chest infections at all. He passed his videofluroscopy like he knew he would. He
has now begun, with a big effort, to suck a small amount of a drink through a straw.
He now eats orally all of the time, with his PEG only being used for meds and fluid
intake. Hopefully this will become redundant too in the not too distant future.
is fighting – he has been working hard on exercising and his neck and head
movements are terrific. He has had the side supports moved from his wheelchair so
that he can practice holding himself up. He has the headrest taken away on his
wheelchair so that he can practice holding his head up unaided. He went, within 7
days, from being able to sit on a bench holding himself up, sitting, using all the
muscles in his torso, from 3 minutes, which excited us beyond belief, to 14 and then
to 40 minutes!! He is so determined, he works so hard and fights against all those
who do not believe he will ever do anything, and he constantly proves them wrong.
He is full of spirit and determination and we are so proud of him.
Howard can also now control his wheelchair on his own. It has a bracket and a nob
on it which he manoeuvres with his face and chin, he whizzes around the park
across the road and the building in which he resides. He scares the life out of us
with his gung-
hungers for. When staff upset him recently, he drove his chair into his bedroom then
reversed back against the door locking them out!! 3 hours he kept them out! They
had to watch him through the window to make sure he was ok. I think he made his
point, and the funny thing is, they never saw it coming!! It made us laugh and it made
us proud that amongst all of this unimaginable sadness Howard has kept his teen
The trust are also buying Howard his own FES bike! (Google it, amazing piece of
machinery!) A very expensive device which will enable Howard to work on his arm
and leg muscles and movement from the comfort of his chair! It is an awesome
piece of equipment which we could never even have hoped for were it not for the
trust, to which we shall remain eternally grateful. We are still awaiting delivery of this
awesome beast, but are very excited, and Howard can’t wait to get his hands and
feet on it!!
So, next time I write will hopefully be an update about Howard’s move back to his
home town. Howard will be advertising soon for his dream team – so keep watching!
If you haven’t yet read my part 1 and 2 of our story, you must read them to see just
what Howard has achieved so far and why we have every reason to be so proud of