Winter Wharfe

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.

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Summer 2017: Week 1

What a week; it’s been a rollercoaster ride!

Our eldest has been out of sorts this week, his sleep pattern has gone awry and he’s become overtired. He has ADHD alongside his autism and when overtired he just cannot stay still or relax enough to get the sleep he desperately needs. Unfortunately, these occassions, though rare, are when he can present with challenging behaviour and a 2 minute outburst, during which he hurt a staff member, has left one care provider hitting the panic button. Meanwhile we have to work extremely hard on very little sleep de-escalating and doing what needs to be done to get things back on track. Experience has shown us that a moderate amount of exercise, helping him to feed himself or adapting to finger foods (he becomes unable to concentrate to us a spoon like normal), plenty of car drives (difficult to move excessively when sat in the car) and avoiding being stuck indoors all day, which makes him very frustrated are what works best, but anyone than us is reluctant to head out into the community when he’s unsettled, so even if we do have some care for him we either have to sacrifice it to do the job ourselves or risk an incident which might jepardise a service.

Wednesday was both the day of the incident and the deadline for our LA to respond to the SEND tribunal regarding his appeal. Fantastic news they have agreed to fund another year at college! We still need to work on agreement over the EHC Plan content, but such a relief! 

Our youngest has had a pretty good week. She has struggled a bit with her brother’s noise and we are having to watch that she doesn’t aggravate him but overall she’s done well. She even coped with the car journey to school with just her dad on Thursday, which is a huge step given that her anxiety was so great at the start of the year she was refusing to let me out of her sight, school refusing and refusing to go in the car anywhere. 

Finally, this week I finished our letter of complaint to school, LA and CCG regarding how she and we were treated during a crisis period that started January 2016 and are still dealing with the consequences now. Always a bit nerve racking actually posting such letters, but it absolutely needed to be done so we’ll wait and see what happens next…..

Our NT daughter had a belated 18th Birthday get together with her friends this week when the “auties” were at respite. We were banished from the house, so took ourselves off for a rare evening meal out and even managed to avoid talking autism all evening too!

So, now we enter the six week period of everyone at home. Shattered already from two weeks of dreadful sleep. Expect we’ll survive, we usually do!

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The Start of Summer

In the past I used to look forward to the long summer holidays with the smug satisfaction of a clean house, a freezer stocked with ready to reheat nutritious home-made family meals, and six weeks of activities all planned for…. it bloody knackered us to pull it off but pull it off we did. These days, well our super-parent capes are looking a little grimy and threadbare; the long holidays seem to come round faster each year and we head into them somewhat disorganised, already exhausted and hoping against hope that this year, maybe, all support services will be in place and no-one is going to give us worse than usual behavioural problems to deal with.

This year is especially significant; our middle daughter has just finished her A-levels and all being well will head off to university in September with a cheerful farewell to spread her glorious wings into full flight. I can’t help feeling a little heartbroken at all the ‘normal’ little things her having autistic siblings has prevented us from enjoying with her. We owe her a lot of time and a few good holidays, as it is we  have been squashing in what quality time we can where we can and hope she goes off with some good memories of this summer.

This week marked the last day at college for our son. We don’t know if he’s going back or not, a SEND Tribunal appeal has been placed, we should hear next week what the council’s position is and whether it will be going to the hearing which is scheduled for October.

As we head into the final week of term for our youngest, we are trying desperately to ensure all the most urgent things are dealt with before our caring responsibilities more than double when she breaks up, but first we have to survive the weekend and we haven’t had much sleep….

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Conistone Dib

conistone

The sleepy hamlet is centred round maypole,

silent stone cottages sleep in the sun.

The lane leads us to giants’ steps

where our walk is truly begun.

 

The dry ghyll is paved by boulders,

adventurously we pass through the cleft.

The limestone scree and wind sculpted trees

open before us to right and to left.

 

The palpable silence, interrupted by bleating,

clings to our unoccupied ears.

The grass, smoothed by innumerable boots,

is splattered with molehills it appears.

 

The steep climb to bleak grassy hilltop

is funneled by cliffs of green.

The view of glacier carved valleys

is different each time it is seen.

 

The drink in of fresh air and sunshine

is refreshing as water to thirst.

The walk back, descending by farm track,

each boot now rushes to be first.

 

The gulls schooling above Kilnsey Crag

symbolise the freedom we feel.

Our hearts made happy by a walk in the Dales

and their gift to uplift and heal.

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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.

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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

 

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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….

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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.

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