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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Not so ‘non-verbal’

When my son was very small he had some speech, clock (tick-tock) duck (quack) and was obsessed with lights (eee-lat-lat-lat accompanied by a very clear pointing finger). On one occasion we were watching Casualty, there was a dramatic car crash where a car rolled over several times and ended up on it’s roof. Little Jamie toddled over to the TV and observed, with great concern “oh dear”. 

At the age of two this emerging speech disappeared, a diagnosis of autism and SLD followed and, subsequently, a ‘non-verbal’ label was added. A few years later the whole process repeated itself with my youngest daughter: autism, LD, non-verbal. For years I accepted this label using it myself to describe the ‘low functioning’ end of the autistic spectrum that is our world. “They will probably never speak, they’ll always be locked into their own world, their disabilities are lifelong with little hope of significant improvement.” Over time, however, I started to question the accuracy and implications of the term non-verbal.

Various Augmentative and Alternative systems of communication (AAC) were introduced to our family. Makaton, a simplified form of sign based on BSL, was first. Jamie didn’t take to it but the eldest of his two little sisters, very bright and ‘Neuro-Typical (NT) sure did. Before her first words came she used the signs she’d observed, with ‘drink’ and ‘biscuit’ top of the list! The Picture Exchange Communication System (PECS) made it’s way over the Atlantic and into my son’s classroom in 1999. Again, he didn’t take to it, at that time, but a few years later his ‘non-verbal’ youngest sister did. She, later, rejected PECS for sign which is her primary, and extensive, form of communication. Through my three children I was, unknowingly, observing a real-life comparative longitudanal progression of language development. 

Whilst my kids were growing up I decided to study. With the incomparable flexibility of the Open University, what started off as an ‘Open’ degree evolved into a Humanities degree with a specialism in English Language. My study of linguistics was revelationary. Hold on a minute, language is so much more than ‘speech’, and the label ‘non-verbal’, with all it’s implications, doesn’t really fit.

Now a graduate, I’m exploring language development in more depth for my own interest, combined with personal experience and I can say this with 100% conviction: not only ‘non-verbal does not mean nothing to say’, it also does not mean ‘cannot and will not ever be able to develop communication now or in the future’. My daughter, at 15, has an ever expanding vocabulary of over 600 signs and uses a mixture of signs, part and full words to communicate, she might be ‘non-verbal’ but that girl has, can and does ‘say’ a lot for herself! Now 23, my son is beginning to use PECS and Makaton to functionally communicate needs and choices, he is also using ‘conversational (modulated) babble’ to communicate, that is he is conveying meaning in the pitch and intonation of his babbling: mood (happy/sad), affection, ‘singing’ etc.  AND, just the other day, in the midst of this babbling, when he was obviously distressed and in pain, I clearly heard the words ‘oh dear, dear, dear’. Not so ‘non-verbal’ after all then.

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Summer 2017 -Week 5

A good news/bad news week

The start of the week was horrendous. Eldest’s restlessness and unpredictability is disturbing youngest. Siblings being siblings, regardless of disabilities, she sets about trying to aggravate him. Constant vigilence and effort to keep them separated adds to the demand on us. It starts to become a battle to juggle in basics like laundry, cooking and washing up.

Due to lack of availability we are also short of daycare for youngest this week. Her overnight respite (one of eldest’s cancelled stays) this week comes as a blessed relief. No chance for rest but a chance to catch up on household tasks and a reprieve from trying to meet opposing needs. We’ve never before had such a period of time where they have needed/wanted opposite things. Youngest, crippled by anxiety, refusing to leave the house unless it’s to go to another building, she so used to love our family walks and outings, it’s heartbreaking (there’s a formal complaint in progress about the circumstsnces that have lead her, and us, here).  Meanwhile eldest cannot settle indoors, he wants to be out, preferably driving around (he’s now getting too tired to want to walk much), but indoors he keeps bringing us shoes, socks and walking boots. As communicative objects of reference their meaning is unmistakable. 

On a positive note, the increase in his seizure meds seems to have settled his frustation and sleep has improved a little. He’s settled into a roughly 9pm to 4am sleep pattern. Thus by the end of the week we have adapted into a hard graft routine that is far from ideal but at least keeps the situation under control.

This week also brought some good news. A level results. Middle NT daughter got her grades to secure her place at her first choice university, one of the prestigous Russell Group universities and close enough to home for her to pop back if she wants to. We are VERY proud of her achievement, studying in this house is far from easy and she has done remarkably well.

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Summer 2017 weeks 3-4

Week three –

Fab day out Monday. Marched up Yorkshire’s Matterhorn (Roseberry Topping) with eldest and NT middle daughter.

Tuesday-  the eldest’s unsettled behaviours came back 😦 hyper hyper – not sleeping. We are having to work very, very hard to prevent this from escalating into aggressive behaviours. He’s needing constant changes of occupation and not too much time indoors. So several short walks and car drives each day. 

Another respite night was cancelled due to staff sickness.

Saturday – a small epileptic seizure, well that explains a lot!

Week Four

More of the same, exhaustion is begining to creep up on us now though. We are really missing those overnight respite breaks. Late nights and early starts since the start of July (when respite ignored his sleep programme and let him sleep in until 1pm in the afternoon, which triggered the initial sleep disturbance, which has escalated into the unsettled behaviour we gave now) have taken their toll.

Monday I deliver a handwritten note for the GP into the surgery asking for possible seizure meds increase. Thursday having not had a response I contact the surgery again. There’s no record of my contact. The GP phones Friday morning, apologises and agrees ro try increasing the current dosage.

I call respite to let them know and as a result discover that they have two totally new (to the job and eldest) staff on with Jamie for his stay there this weekend. I am told no staff that know him are available at present. Due to his autism, new staff would be a challenge at the best of times, whilst he is unsettled it’s a recipe for disaster. We have no choice but to cancel his stay, the fourth that was co-ordinated with his younger sister.

Meanwhile the list of urgent unattended household chores is getting longer. It’s just not possible keep on top of everything whilst we are stretched so thin. We endeavour non-stop to tame the mess but it doesn’t look like it! We do have some cleaning hours in the youngest’s personal budget but it just touches the tip of the iceberg. Along with the unsettled behaviours comes even more than normal autism related housework, in addition to the usual work that comes with a five person household. Added to which the youngest’s sensory needs means she struggles to cope with noises such as the hoover, clattering pots and pans or the waterpipes clonking as the washing machine and dishwasher fill up. By the end of a school holidays that isn’t made harder because of missing services or behaviour problems the house is always messy and dirty. Hopefully this year we’ll get a chance to clean between the holidays finishing and and our diary filling up with meetings and appointments, but that might be wishful thinking!

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Summer 2017 – week 2

Another eventful week, so eventful in fact I find it difficult to remember everything!

Last weekend we started to see the results of our efforts and to get the eldest’s sleep pattern back on track. Then we had a decision to make: did we send him to respite Monday afternoon or not? It was one of the rare nights that both ‘auties’ are at respite at the same time. Precious time to spend with our middle NT daughter. I spoke to respite, they were not able to take him out at all the following day. We decided to let him go for the overnight and have him come home early the following day. 

Sunday/Monday night. Between eldest, asleep at 1am, neighbour’s lad, howling on Skype or something until past 2am and youngest up at 5.15am I get 3 hours sleep. (There have been times when I’d have thought even that a luxury, but not feeling fortunate this morning!)

Monday evening, after a delivery of groceries, cooking dinner and emptying and re-feeding the washing machine, tumble and dishwasher off we went to the cinema. Brief normality. A good nights sleep and the morning starts with where I left off yesterday with cramming in as much admin and housework as possible in the short time I have.

10 am I recieve a phone call from the respite unit. An incident. Not eldest’s fault, but involved another service user, a staff member got hurt. 

10.05 another call. Transport collecting daughter from children’s resource centre but the booking sheet is wrong and she’s actually in until 3pm! Abruptly our plans for the day change completely.

11.30 ready and waiting for son to come home.

Midday, call from transport. A very unhappy chap on long taxi journey of over an hour home. Just as well the company know him well and that it’s unusual for him to be difficult. Our plans change again. We’re on standby to go and meet them on the last stretch home, but they make it back. Son dashes straight for the toilet. Must have been desperate!

The phone rings again! This time it’s the wobbly provider. Checking how things are. I say eldest not going this week (don’t want them to undo our hard work) Now they are saying not doing eldest from September. They’ve been doing him for six years but now they feel they are ‘not the right service for [him].’ BULLSHIT! Still, we’ve been trying to work out how to sort out some particular issues with them for a while, now it’s not an issue anymore, BUT, wonderful timing… gee ‘thanks’.

Evening. More bad news, from the respite unit this time; other user involved in incident is staying for 11 nights when family go abroad, (I assume on holiday) so two of eldest’s respite stays postponed. Both co-ordinated 10-10 stays, our ONLY full days with middle daughter for long day trips out (we haven’t had a holiday for 6 years because of autism related issues). I understand the unit had no choice…. but 😥 

Wednesday. Sleep. YAY!  Youngest stays at playscheme all day, too anxious earlier this year to do more than 10 minutes. BIG POSITIVE. Ask college if they can offer son some care over summer. They can. Not the ‘lost’ overnights but it’s a help. Feel better.

Thursday/Friday still working extra hard to get eldest back on track.

Saturday- now youngest is not sleeping well grrr she will not walk from home. She’s also.trying very hard to wind her brother up despite being scared if he so.much as looks at her. Constant supervision needed when both upstairs in their rooms. Then she starts to target me, jabbing or kicking, being uncooperative and lokkimg into my face and signing ‘sad’. Don’t react. Don’t react. That’s what she’s looking for. Her anxiety, boredom and lack of exercise all factors. God this job is hard!

Saturday/Sunday – breakthrough. Our Mr Happy is back. Walks, car drives, trips to McDonalds, the pub (twice). He loved it all. HOORAY! 🙂

Now if I could just get Little Miss Mischief sorted……..

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Risk Aversion

One of the issues we have frequently come across on our autism journey is risk aversion. Where some care providers are reluctant to support certain young people in the community because of their behaviour. I suppose, like ‘behaviour that challenges’, it’s one of those things that depends on an individual’s or group’s attitude; what one person or group will consider ‘challenging’ will be accepted by someone/somewhere else and likewise an element of risk will be accepted by some and not others. 

First, though, consider ‘risk’ itself. We all take risks, everyday. Take driving for instance. Obviously, some risks are foolish and dangerous, like overtaking on a blind summit, whilst others are not of our making, like driving uphill to suddenly be faced with a speeding vehicle coming towards you on the wrong side of the road. The question is do we stay at home and never take to the roads, or do we take steps to control our risk, such as checking our brakes work and keeping our own speed down?

Back to autism, in much the same way as the general population people with autism can get frustrated and distressed and occassionally that can spill over into ‘challenging behaviour’. This isn’t only an autism/SLD thing, think of road rage or the need for security guards at A&E departments; humans can get pretty het up when stressed, whilst the worst cases might end up in arrest, most people don’t get labelled as challenging and kept away from the public forever just because they had one moment when their feelings got the better of them.

It is so disheartening as a parent-carer to see your young person denied opportunities to go out into the community because of the risk aversion of a care provider and the fact that they ‘might’ on occassion behave in a ‘challenging’ way. It’s so limiting to their learning, the building of confidence and acceptance in the young person, the support staff working with them and the general public, not to mention the negative effect on physical and emotional well-being through being inactive and cooped up indoors. It’s so easy for providers, citing reasons of safety, to just stay at base, not just when the occasion justifies but all the time.

I frequently joke that we often walk with our ‘auties’ “where there are only sheep to scare”, (it’s our equivalent of looking at the weather and deciding that maybe we shouldn’t drive on the motorway today) the freedom that open space with limited dangers affords both young people is a joy to share with them. Whilst our youngest struggles with her anxieties and sensory needs, and being anywhere where people are is fuel for a potential meltdown, our eldest is more than happy to pop into our local Weatherspoons for a sausage sandwich and/or a pint. It’s all a matter of assessing ‘risk’ and adapting accordingly. Hiding indoors forever is not an acceptable strategy in my view.

When I took my eldest out for a walk today, I wondered, yet again, why some people are so scared of taking him out. So, I video-ed a section of our walk, what was I doing on my own that is so difficult for others to manage with 2-1 support? I don’t know the answer to that. I did what I usually do, I’m aware of my surroundings, the traffic and people and potential dangers, I guide my son, mainly verbally, sometimes physically, (holding his hand, to lead him across the road when a car let us cross) I guide him to the inside of the pavement, and keep him within arms reach at points when an impulsive sprint would be dangerous. Otherwise, yes, he was hyper today, but although his behaviour would mark him out as disabled there was nothing that would have been risky or dangerous. We both got exercise and enjoyed our visit to a cafe and returned home more relaxed that when we left. 

I really struggle to understand why services are so risk aversive!

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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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