Winter Wharfe

The Wharfe was flowing fast today…

barbgrant

The river flows with menace,

a boiling torrent

of peaty turbulence.

Winter walkers tighten grip

on leads and little hands,

fearing accidental slip

into the wild malevolence.

 Yet the river holds fatal charm,

despite the walkers’ diligence,

it attracts, dares them near,

entrancing eyes. Until, blinking,

they recall their fear

and proceed cautiously,

along the riverside path,

in awe of nature’s wrath.

View original post

Advertisements
Posted in Uncategorized | Leave a comment

Merry Christmas from the Grants

Another eventful year has sped by & the children are keeping us as busy as ever.

Jamie is doing so well now; the medication he was prescribed for epilepsy has worked well & all his behavioural difficulties of the previous year have resolved. He has settled well into college & is making significant progress, exciting recent developments are him spontaneously signing & showing a much greater comprehension of what we’re saying to him. He is well liked at college & was chosen to be featured in both their prospectus & World Autism Day blog post. I was also asked to speak at the official opening of the new autism centre at the college, which was both exciting & terrifying!

Heather is quite the young adult now, she did very well in her GCSE’s with ten passes ranging from A* to C & is now settling into King James’s School Sixth Form studying for A levels in Geography, English Language & English Literature. Earlier this year she was lucky enough to go on an amazing school trip to Iceland which she thoroughly enjoyed.

Paul & Heather still enjoy going to football matches together, although fewer trips this year whilst Heather is studying, they have been to Hull & Stoke-on-Trent.

Hazel continues to be up & down, we had a very settled spell last spring & early summer & things seemed to be going really well but then towards the end of the school year she had a spell of being challenging. Apart from lashing out at me, she is also quite destructive & keeps Paul very busy repairing the things she’s broken.

In amongst the chaos I managed to complete two OU modules, a short course, World Archaeology, & the module I deferred from the previous year, The art of English. I was so pleased to get grade 2 passes for both of them. Now I am on my final module, Exploring English Grammar, which is a quite misleading title for a course which actually focusses on linguistics rather than ‘traditional’ grammar!

Links

Jamie Henshaws College World Autism Day: http://henshaws.org.uk/blog/world-autism-awareness-week-2015/

Barbara Henshaws autism centre opening: http://www.harrogate-news.co.uk/2015/07/06/specialist-college-launches-autism-educational-centre/

Hazel Springwater school http://springwater.n-yorks.sch.uk/index.php/secondary-3/image-gallery

Heather Iceland Trip (Chaloner Magazine page 21) http://www.king-james.co.uk/ChalonerEdition68/#20

 

Posted in Uncategorized | Leave a comment

you can knock my weeble over but you can’t keep it down…

Maybe it was just bad timing the letter coming at the end of a gruelling seven and a half week summer holiday, talk about being kicked when you are down. I read it once, I read it twice and then I just wanted to cry. I despair. I despair of ever being to escape the hidden slavery that is the lot of the millions of carer’s across the country, I despair of us ever getting anywhere near the rights and entitlements laid out in the Carer’s Act, I despair of us ever having freedom, choice, or looking after our own health. I despair of ever being treated as people with rights, and most of all I despair for my disabled son and daughter’s futures. It’s a disgrace, really, the legal loopholes that allow the agencies to get out of being accountable for their shortcomings.

When my son turned 18 the transition process should have produced a fluid, seamless move from Disabled Children’s Services to adult services, it did not. The family were without overnight short breaks for 13 months… after complaining we were offered a 52 weeks recompense but couldn’t take this as my son was again without services. Having taken the complaint up to the Parlimentary Ombudsman we have been told that the CCG are not at fault. They are still willing to provide the 52 nights… fair enough, but the damage to our family has been done.  What really irks is that no-one is being held to account for the non-availablity of services. Basically they ‘can only work with providers who respond to them’.  So where does that leave us as carer’s? Where does that leave my son a if we are ill or injured? Where does that leave him if we are unable to care for him any more? Up shit creek with no paddle. It’s a simple as that. When the system has no services they don’t have to provide them. Forget the Carer’s Act, forget my son’s rights, my disabled and non disabled daughter’s rights and childhoods. When the system fails we have to pick up the shortfall… it doesn’t matter how many times it’s written down that we can’t cope without respite, let alone have any quality of life. It doesn’t matter that our teenage daughter, who is a recognised young carer, also struggles to cope and we are not able to support her as much as she needs. We as carer’s are locked into an emotionally abusive relationship with the system, our vulnerable relative’s welfare at stake, how can we walk away when, with no local services, they could be sent hundreds of miles away to one of the dreaded Assessment and Treatment Units where abuse of people with learning disabilities is commonplace. How can we walk away when they need us? The system knows we will not. We are the donkeys, the work horses, the system is the whip and we will work until we fall down in our harnesses.

Yes, maybe it was bad timing the letter coming when it did, maybe next week I will pick myself off the floor, write yet another letter of complaint and start the whole process again for the second period of 13 months that we were without overnight Short Breaks for my son. (And while I’m at it there’s one I need to write for my daughter too.) But right now, my inner weeble has been knocked over and is having a bit of a wobble….

Posted in Uncategorized | Leave a comment

Laundry Time

Baby gros, tiny as dolls clothes

romper suits and pretty frilly dresses.


Mini appliqué jeans , little Tiggers

and trucks, bouncing on the line.


School uniforms, small and smart

washed clean of mud and primary paint.


Blazers and kilts, high school hate.

Black, black and more black, all the same.


Fashion statements, clothes worn once,

laundered to newness

whilst time

rushes on.

Posted in Uncategorized | Leave a comment

Public Appeal to our MP

The purpose of this letter is to highlight the fact that even when funding and entitlement are there, services are often lacking. My family has suffered significant stress and difficulty because of a lack of service provision to meet assessed needs, as carers it feels as if our rights and welfare do not matter, for our disabled young people the sad truth is that we cannot continue much longer, no-one loves them or can care for them as well as we do, but our inevitable collapse, if services don’t get sorted soon, will mean that they would have to be cared for elsewhere. I have made this letter public for us and others like us……

Dear Mr Jones MP
I am writing to you to raise my concerns about the appalling difficulties in obtaining reliable local support services for autism and challenging behaviour my family has experienced in the last few years. We find ourselves again and again in the position of lacking the support services we desperately need, to cope with the demands of caring for our two severely disabled young people.
We regularly encounter issues with getting the support we need. The main issue is with a woeful lack of local Short Breaks (respite) options for our young people, through both adult and children’s services; when a service fails, stops or is unavailable we are left with no replacement for the missing service for months at a time. These issues are often out of the control of not only the Care Managers, but also their managers, there are simply not services available to meet the assessed needs. Time and time again it is my husband, my non-disabled adolescent daughter and myself, who not only have to meet the increased caring demands these gaps in service create but also have to cope with the impact these deficits cause on our own health, well-being and autonomy.
As a family we have made many official complaints but we have lost faith in these having any long term beneficial effect to the services we receive. Our most recent complaint against NYCC Children’s Service was taken up to Ombudsman level, before being resolved after the Ombudsman found a number of failings. However, we have still experienced significant gaps in service this year. We complained to NHS Continuing Care, regarding the thirteen month delay in establishing overnight respite services for my son, when he reached adulthood; despite their apology and offer of additional respite to ‘make up’ the missing time, we did not receive any of these recompense respite nights and have again been without any overnight respite breaks for him for several months. On top of this, his day care service has had staffing issues which resulted in more missing support. Over the summer break we were missing a total of 45 hours respite services, per week, for both young people. All involved agencies agree that for us to continue in our caring roles under such pressure is untenable, yet that is exactly what we are expected to do until services can be sourced. Additionally, we have been told that it is not possible to have a contingency plan in place in case of emergency, such as someone needing urgent medical treatment, as no emergency care is available. It’s precisely because services cannot be conjured out of thin air that we need to plan for emergencies and in fact Carer’s UK state “Every carer who has an assessment should be asked about emergencies and offered help to plan for them”.
Furthermore the constant need to fight to access other support services from health, social care, and education exacerbate the stresses of an already challenging family situation, often on little or no sleep.
After the Winterbourne View scandal the government response laid out “clear, timetabled actions for health and local authority commissioners working together to transform care and support for people with learning disabilities or autism who also have mental health conditions or behaviours viewed as challenging. Our shared objective is to see the health and care system get to grips with past failings by listening to this very vulnerable group of people and their families, meeting their needs, and working together to commission the range of services and support which will enable them to lead fulfilling and safe lives in their communities.” (Transforming care: A National response to Winterbourne View Hospital, Department of Health Review: Final Report) We should be being supported to look after our young people at home and, in time, within their local community and this shouldn’t be at the cost of their or our own, health and welfare. Without appropriate, reliable local services this, in reality, cannot happen. There is an identified ‘spike’ of autism in the Harrogate area and we are sure that we are not the only local family struggling. We appeal to you, our MP to speak up for us and others like us.
Yours sincerely,

The Grant Family.

Posted in Uncategorized | Leave a comment

Hazel Talking

what a clever girl view here https://www.facebook.com/photo.php?v=762149537144538

Posted in Uncategorized | Leave a comment

A Landscape Through Time

019014

A Landscape through Time

The ramblers finally reap reward
at top of hill where they pause,
gasping for breath, hearts pound, calves burn
as about them they look, look and turn,
to see the Dalescape laid out below
what formed this magnificence? They want to know.

The stone was laid in ancient warm seas
where, waving branches like trees in a breeze,
generations of corals lived, died,
sediment compressed, thrust to the skies
by tectonic forces immense, slow,
from which hills silently grow.

Ice Age glaciers carved the Dales,
meltwater traced ghost rivers trails,
leaving waterfalls long since dry,
erratics, spewed from glacier foot, lie
marooned on hilltops, where children play
imagining giants arranged them this way.

The first men came just to hunt
leaving behind only tools too blunt.
Lynchet terraces marked the fields,
dry stone walls drizzled the hills,
where man began to leave his mark
on this modern day National Park.

Legions of boots and hooves
gouged out telltale grooves,
of Roman roads, drovers lanes.
Monastic flocks from vast Fountains
driven miles over the hills
to distant markets in the vales.

Industry and mining took its toll
as man dug out lime, lead and coal.
Mills, canals, Ribblehead’s great span
devised by engineers Victorian.
Tarmac rivers wind near and far
bringing tourists and the age of car.

The ramblers take part themselves
As hiking boots mark out trails:
Pennine, Nidderdale, Coast to Coast,
all have spectacular views to boast
and ramblers, awed, try to define
the essence, of a landscape through time.

Posted in Uncategorized | Leave a comment