Eyes WIDE Shut…..

Do you remember my friend Mrs Jones?(https://definitelynotthewaltons.com/2016/05/10/once-upon-a-time

We met again recently for coffee. Truth be told both of us could have done with a large gin followed by a prosecco chaser but it’s generally frowned upon at 9 O’clock in the morning  and however much we tried to pretend it was 5 O’clock somewhere, I think even for us that was reaching.

Mrs Jones has had a tough summer. She’s not really felt up to chatting about things much and it gets a bit boring, painful, not to mention shameful to divulge too much. When the online food delivery arrives, you can bet your bottom dollar that the driver doesn’t really want your life story in response to “and how are you this morning?”

Mrs Jones knows too that once you open the floodgates, you risk breaching the dam so most of the time she keeps it inside, stiff upper lip and all that. After all isn’t it what we quintessentially British people do best? (And perhaps explains at least part of the reasoning behind the UK’s rising mental health crisis?)

Mrs Jones has learned not to trust, not to expect too much and most of all not to hope. The various agencies that assured her they would spring into action in response to James’s increasing anxiety and therefore violent outbursts against himself and the rest of the family have all gone suspiciously quiet. False promises, empty words.

The teams that told her she and her family needed urgent support over the summer holidays and how concerned they were for everyone’s well being in a time of increased family contact went awol, or possibly at least to France; who can say? They have largely so far failed to return.

Even though Mrs Jones has had to contact the police on several occasions, disarm James who had located a hammer and used it to bash holes in the wall, break chunks of wood off his bed and threatened the family with said hammer; despite Mr J having installed locks on various cupboards to store sharp objects, medications and chemicals and having   purchased a safe with a combination lock, (not to store immense valuables – no matter how much she’s hinted to Mr Jones about the diamond earrings she’s rather partial too)  but to keep all the different keys to cupboards, the wine chiller, the garage, for James’s own safety as well as the wider family.

Reporting these numerous incidents to the authorities and those intricately, intimately part of the Jones’s life, those who Mrs J thought had the power to do SOMETHING has elicited nothing more than a raft of paperwork that could deforest the Amazon (she and I both hope they are using recyclable paper) and a pitying head tilt with a promise to follow up and report back…at some point….Good job Mrs Jones hasn’t held her breath; she’d have expired a long time ago but each time she has to go through this rigmarole, in the vain hope it might generate some actual support, a little more of her crumbles away inside.

James meanwhile is no longer able to attend full time school and is doing the core subjects of English, Maths and Science only. This has been the case since the summer term and Mrs J spent much of the time before school broke up for the summer driving James between school, CAMHS and the hospital as needed; this is hard enough when you have one child with issues, add in others, it becomes ever more problematic.

As the school year progressed, James’s anxiety meant he couldn’t take the school bus even at times of the day when he had to be in first thing or last lesson before coming home. Mrs Jones tells me she is seriously considering a crowd funding venture into cloning for the regular parent….I’m sure she’s on to something there.

Now that the Autumn term has resumed, James has again only been able to return to school in a limited capacity and scarily, the Jones family are as yet, no closer yet to having obtained an Education Health Care Plan (EHCP   – https://www.ipsea.org.uk/what-you-need-to-know/ehc-needs-assessments)

The Local Authority have 6 weeks from the date of application to decide whether they will assess a pupil for a plan then a further 20 weeks to discuss putting some kind of plan in to place and if that is agreed a further 26 weeks to hammer it out and implement whatever has been decided. A year then to plot a way forward at time of desperate need. The Jones family may still be waiting for something to be done this time next year!!

What the Jones’s would like and what James craves in terms of education AND respite is an education in a school that deals specifically with children who have high functioning autism, ADHD and PDA – Pathological Demand Avoidance – http://www.pdasociety.org.uk/what-is-PDA/about-pda

The Jones’s have managed to locate such a school. The school offers both day attendance and Monday to Friday boarding. James upon visiting the school, despite his initial trepidation and fear of something new, quickly blossomed before their eyes. His excitement after they met the headmaster, other teachers and pupils, viewed the grounds and the activities and support available was palpable. James had found his niche, his happy place, his square hole to fit his square peg.

James was for the first time in a very long while, enthusiastic about the possibilities that education could bring him in such surroundings and perhaps of most importance, the head teacher (who had initially promised 30 mins of his time, but ultimately chatted to James for an hour and half, gave the family a personal guided tour and invited them to stay for lunch) recognised something in James that could be honed; something that could be worked on, to help James become a productive, well balanced, well educated and happy member of society over the longer term.

Ultimately the Jones’s, the headmaster and James himself felt this school would enable James to achieve what he is truly capable of  academically and personally. It would promote his self esteem, life skills and education both in the short term and over the years ahead to  ensure James could contribute economically, personally and professionally to the system of life.

However, although Mrs J has been assured by one department that James will definitely qualify for an EHCP, ultimately of course it, all comes down to that mother of all evils: CASH. Pure, hard dirty money and therein lies the crux. Who will pay for this? How can funds be found? As Mrs J was advised by a source, the local authority have a duty to provide your child with an education; that however doesn’t mean the best education for your child, what meets their needs best; what best supports the family as a whole.

Such was the desperation of the Jones family to secure a place at this beacon of hope, they enquired about the possibility of self funding if they could somehow find a way. But this is not an option for this particular school and only with an EHCP and funding from the local authority can James attend the school. So what will become of this family?

James’s siblings spend large parts of their time terrified of their brother’s volatility, creeping around, never knowing what can or will set him off. James’s siblings have witnessed and been subjected to his violent outbursts.

Recently his little sister was so scared of him she chose to stay on her bed and wet herself than venture into the bathroom. James’s brothers have been put in head-locks, kicked, punched, jumped on. One  refuses to sleep in his own bedroom and another wants a lock for their bedroom door having heard James during a rage say he will kill him in his sleep.

They have seen James lay into their mother, using her as a punch bag in moments of sheer fury and frustration. Other adults have had to intervene on more than one occasion and the humiliation, burning shame of that, can never be under-estimated. James is hugely remorseful after such an outburst and for days after but it doesn’t stop it happening again.

The family live on tenterhooks, tip-toeing round trying to keep the peace. Family outings have become more problematic since James’s sensory processing issues have become more pronounced (he finds crowded places, busy places, noises of a certain pitch very difficult to manage and whilst the rest of the family enjoy heading off to explore and do things together, this is increasingly difficult and stressful to do en masse.

All the while, it’s clear to me and probably those around them, that the Jones’s family are barely holding it together; living in some kind of waking nightmare and sleep walking through life. But will those who hold the purse strings, those who have the power to provide some form of respite to this family see the bigger picture? Will they see past a balance sheet for one child and view the family holistically so that it doesn’t end with the rest of the children needing input from a mental health professional, from the police, from god-forbid, A&E or potentially worse still….





Categorized as Undiagnosed

By definitelynotthewaltons.com

Jelly tot consuming Mother of 4 kids, 1 cat, 2 dogs. Wife/leader in chief of our tribe. Autistic & medically complex kids keeping us entertained, on our toes & never bored...lover of all things sparkly, handbags & shoes. Proud to be a “difficult parent” in the world of SEND

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