How do you sleep at night?… part 1…

Heads up, a warning: I am enraged. White hot, scalding anger that is making me vitriolic and bitter. 

I know it’s doing me no good and I should channel some inner zen but there’s no yin in my yang and frankly I need something else to focus on; some kind of drive to power forward instead of zoning out passively. Time to create a stink. 

I don’t as a rule swear very much. Mainly because I have spent and continue to spend a great deal of time round small folk, be they my own or other people’s and the fact that mummy has a potty mouth is not the kind of accolade I want to be renowned for.  It doesn’t mean I don’t think in creative Anglo-Saxon oaths but I try to restrain myself from actually launching into a tirade that would make a sailor blush. 

Over the years, it’s been quite amusing to find substitute words for the things that have nearly slipped out & turn them into something socially acceptable before the offspring absorbed it as their latest word du jour. 

Try to teach them please/thank you/hello/goodbye in polite company, you would think I was attempting to teach them the full works of William Shakespeare… in Flemish. Yet one *almost* expletive of a wangdoodling, cowbunkerling f-bomb amd such like and they have absorbed it by osmosis. 🙄

Tonight however. I make an exception. I am angry. So fucking angry. The fact that fucking just autocorrected to ducking as I typed it, has incensed me further still. 😡😡

I feel sweary. I feel ranty and shouty and full of words my Dad would get cross with me for using (even though he taught me most of them) I’m even tempted to use the ‘c’ one (& I don’t meant Christmas) – sharp intake of breath.

But I can’t have a good shout, unleash a stream of invective because yet again we are in-patient on Hotel NHS and there are a lot of very small people around whose parents would quite understandably be distinctly unimpressed.

So I’ll do my ranting, raving and effing and jeffing here on my blog; after all I did start my musings some years back in an effort to make sense of it all. Life that is. It’s been cathartic to brain fart away.  Download and dump the crap (d’ya see what I did there?!) 

Half the time I start a blog post with some vague notion of what I want to write about but no idea what will spout forth. I usually feel better by the end. I’d love to be all coy and twee and say I don’t care if people read it or not but actually that would be a lie. I do care. I suppose I need some validation. 

Tonight however I REALLY need you to read it, share it, spread the word. Because I’m sick of the powers that be getting away with it. Letting down vulnerable children. Leaving families in crisis, drowning in despair and fracturing already fraught and taut relationships. 

3 weeks ago today we took our local authority (LA) to a special educational needs tribunal in an effort to secure an appropriate, residential school placement for our high-functioning autistic son.

This was a culmination of 18 months of fighting and battling and relentlessly dealing with the stalling, the hoop jumping bureaucratic, bean-counting process. 

Our 14 year old who should have chosen his GCSE options last school year and commenced this September term on the pathway forward to achieve his future potential has been entirely let down and cast aside by THE SYSTEM.

Would it shock and surprise you to learn he’s received less than 2 hours education per day since March 2016? I know it does me. 

I also know if we personally elected he only attend school for this woefully inadequate amount of time, over such a long period, we would have been threatened with fines and imprisonment by the education department. But this situation is not of our making so apparently that makes it legal, ok, just tickety-boo and we can all smile sweetly, nod and wave because they are trying THEIR BEST. Except they are not. 

The powers that be are far more concerned with covering their departments backside, zealously guarding their pot of funds so they don’t actually have to put it towards what’s in the best interests of the child. 

 I hasten to add this is NOT the fault of his current school who have done everything and then some to support him and us as a family in providing him with a suitable education whilst time ticks on relentlessly. But they don’t have the resources or specialist autism knowledge to support the style of learning and can’t provide the low-sensory low-stimulating environment he needs to facilitate his learning.

Even so his mainstream school have strived to do all they can; he has 1:1, sometimes even 2:1 sessions in an area well away from the hustle and bustle of the main school. They have come up with creative and thoughtful ways to stimulate him;  to forge a kinesthetic approach that captures his imagination where they can. But it’s not working. 

On that at least the LA are in agreement on. But that’s pretty much where it ends. 

I knew I should have smelled a stinking, great dirty rat when the  placement panel convened in October last year and agreed that our son did indeed require a specialised educational establishment. 

Not for us the refusal to assess for an education health care plan (EHCP), not for us the refusal to grant such a plan and not for us the dispute over main stream or specialist placement. So I should have known. It had all come to us far too easily.

Having had the benefit and heartbreak of reading other parents accounts of the lengths they have had to go to even just to get their  LA to agree to assess, I knew we had been extremely, for want of a better word, ‘lucky’ 

But really that’s where our luck ran out. It’s much harder than you think to find appropriate, specialist education. There are a myriad of schools out there meeting complex and varied needs but how do you narrow it down?

In actuality your LA are supposed to help you with this too. They paid lip service to it so I ended up resorting to google and a pick and mix approach, narrowed down by area of expertise and geographical location. 

I’ll spare you the laborious ins and outs of the very lengthy and exhausting process. Suffice to say, after panel sat in January 2017, they decided they didn’t have enough information on our case to make a decision. Sigh.

In February 2017, although all the information from the 3 schools we had received provisional offers of placement from (we had approached more than 12 by this point who couldn’t meet our son’s needs) the panel asked to consult with yet another 3 schools. Of course if they had read the case notes properly they would have seen that 2 out of the 3 had already been approached by us and felt unable to offer a place. The remaining school was full and wasn’t suitable for reasons I’m not at liberty to go into. It would be an understatement to say I was fuming.

The assessment and review officer (ARO) acting for the LA tried her best and wanted to expedite matters instead of making us wait till the March sitting. She was new and fed duff information from people higher up the food chain who left her carrying the can after dangling false promises.

The people with THE POWER don’t like taking your phone calls. They are it seems unable to respond to email, even when you have their direct email address. Their phones must also be unable to make out going calls as they never call back and mysteriously all voicemails go awol. Or something. 

Apparently they can reply to your local MP if he/she gets in touch after you have involved them and made them aware of your dissatisfaction  but only with vague promises that matters are in hand and will be dealt with. A word to the wise: don’t hold your breath. 

So March 2017: to our dismay,  panel named a wholly inappropriate day-placement school some hour or so away from our home which they expected our son to travel to and fro on a twice daily basis.  

Having previously viewed this particular school, I had submitted a lengthy explanation highlighting why the establishment, the cohort of students, the academic remit (or lack thereof) and lack of opportunity to promote our son’s social/emotional development in a holistic over-arching approach to his education were not just incompatible but potentially very damaging and in the worst case scenario likely to exacerbate his anxiety, self harm tendencies, suicidal idealisations and more extreme behavioural difficulties. These concerns were also backed up by his psychiatrist and psychologist from CAMHS (child adolescent mental health) in 2 separate letters. 

It will hardly comes as a surprise that the school the LA had selected was the cheapest option. 

I was swiftly reminded that the LA only have a duty to provide an education for my child and if they can prove that is enough, it doesn’t matter what we know to be in his best interest, what has already proved dividends in students with a similar make up, what’s in the best interest of society over the long term in aiding him to achieve his potential, thus ensuring he contributes economically, socially and attains independence; to negate relying on the state for benefits, or support services. The school we have found and the costs associated with it are ‘incompatible with the public purse’ and therefore they can refuse to provide it. 

They accepted the school we had found is superior in every way; they accepted it could meet need and that  like on like it would (based on past performance of students very like our son) offer him the best opportunity and chance of success going forward. Indeed The Judge at tribunal was very clear on all these points.

Yet the LA refused to concede. They have played dirty; suggested we have stalled the case by refusing to ask for an earlier tribunal date – although fully aware that the independent educational psychologist we had asked for input from couldn’t assess until the end of June. Paradoxically, once the extremely enlightening report had been shared with the LA and we suggested moving up court proceedings, they couldn’t accede to our request. 

Although the statutory dates for submission of evidence were clearly set out in writing and which both parties agree to abide by, the LA suddenly found a pressing need for their own educational psychologist to assess our son, although they hadn’t deemed it necessary since the previous visit a year ago. Funnily enough they then asked for the revised report be admitted into late evidence.  

Surprisingly they also suddenly discovered a letter that had been ‘misplaced’ from our son’s psychiatrist (and which we had never been party to even though we have always been copied into all other correspondence to date) which were counter to 2 previous letters she had written supporting the need for a residential specialist school and expressing her grave concerns to him being placed in an environment such as that outlined in the LA’s chosen school. How very curious indeed that all this information had only just come to light…..

To be continued…. 

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Blinging it…….

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The weekend just gone was a fab one!

I was invited by SWAN UK to attend a blogging workshop to discuss techniques, skill sets, twitter and the issues of being a parent of an undiagnosed child in general, especially bearing in mind that April 29th 2016 will be this years Undiagnosed Children’s Awareness Day.

Us parent bloggers are hoping to bring forth some pretty darn spectacular pieces to raise greater awareness as well as much needed funding. You can check out more about the work of SWAN UK and read some of the many amazing blogs from fellow parents on the SWAN UK Facebook page:

SWAN UK (Syndromes Without A Name)’s Page – Facebook

Being invited to meet and liaise with a pretty fab bunch of women, booked into a hotel  for 2 nights no less, no kids, no medications or feeds to prepare  was definitely a win win situation for me. RESULT!!

To his ongoing credit and ever accruing brownie points, hubby truly stepped up to the plate and agreed to drive me down to Birmingham where the event was taking place, tagging along all 4 of our children, their various accoutrements plus his drill so that he could carry out some minor DIY issues for his Mum who lives nearby.

Although the preparations beforehand required some kind of military style organisational skills and when we finally left the house, it looked like we were going for 2 weeks not 2 nights, we made it out the door on Friday night running only 20 minutes later than our planned departure which by Beaton Family standards meant we were actually on time.

Traffic was in our favour and the amount of FB notifications pinging out in the car suggested I wasn’t the only excited SWAN mama. To be fair, I think some of us were giddy with the thought of having uninterrupted sleep in a hotel room, although since most of us stayed up chatting and quaffing the odd glass of wine (or 3) into the small hours, the sleep factor meant little in the end. As another Mum put it so eloquently: we are SWAN parents, who needs sleep?!

Prior to the meet up, there had been plenty of discussions about the important factors of the weekend: what to wear, how many pairs of shoes to pack, whether we were going “OUT OUT” after the workshop and who would be having a fake tan in advance. 😉  Mindful of course of the importance of the event itself, we also reminded each other to bring lap tops, tablets and so on so that we could actually turn our attention to the reasons for the weekend.

I have to confess that although I love my tribe dearly, knowing that they were in the more than capable hands of my hubby and my mother in law, I didn’t have any qualms about leaving them (although of course I did miss them….a bit) but for one of the Mummy’s concerned, it was the first time she had ever left her swan in 5 years and that is no mean feat. She also left him for not one but 2 nights – a pretty fantastic effort for a first timer.

I’d like to think that she went home rejuvenated and wanting to do it all again but as she had the dubious “pleasure” of being my room mate and we spent waaaaaayyyy too much time chatting, I’m pretty sure if she goes to any other weekends, she will want a room all to herself!

Friday night saw a handful of us get together as the majority of the team were arriving the next day. It was good to put faces to names – or faces to blogs – many of us have never met in the “real” world (there are over 1000 members in the SWAN UK group, obviously not all of them blog) and although I have met a number of SWAN UK parents in the past on days out, coffee mornings and such like, many of the group have become firm friends but only on a “virtual” basis.

In my experience, SWAN UK is a very unique and special organisation. Bearing in mind that none of our children have a diagnosis, or they may only be newly diagnosed/ obtain a diagnosis that is so rare very little is known about it; in some case they only get a series of random letters and deletions which no doubt make sense to the medical bods but tell us very little about out children’s future prognosis. Our children’s needs and issues can vary dramatically  -those who are profoundly medically complex/fragile, those who are physically disabled or cognitively delayed, there is the most wonderful sense of inclusion, belonging, a glue that holds us together if you will. There is always a friendly voice, a wealth of information and experience and a real feeling of community so every time I am lucky enough to meet more SWAN UK parents, I really do enjoy the connections we have.

Saturday morning dawned far too early after too much chatting but fortified by a stonking breakfast (waffles yum!) we attempted to find the conference venue. Having negotiated the delights of Birmingham city centre which is presently in the middle of a huge rejuvenation project and thus thoroughly confused the sat nav, we eventually made it to the conference venue and sat down to an unlimited supply of coffees and pastries. If it wasn’t for the fact that our team leader was a bit of a whip cracker and determined that we would knuckle down and stick to her well thought out and planned agenda for the day, we might have thought we were just out for a jolly.

However, ice breaker games played, we quickly settled to the tasks in hand and brain stormed like mad. Whilst it has to be said that I am still a total technophobe and probably a liability (turns out “plug ins” on blogs has nothing to do with hair straighteners, who knew?!) I learned some very valuable and useful info which I hope will assist me in blogging henceforth. I can’t pretend I truly understand widgets and linkies and all the other terminology that was bandied about but I do know some pretty good places to do more research and a lovely, very experienced fellow blogger has offered to take me under her wing and tweak mine as necessary…an offer she may live to regret when she realises quite how kack-handed I really am with tech!

I also got to develop my understanding of Twitter a bit better and whilst I don’t think you will find me a tweeting regular, I can see the benefits of such instantaneous connections with a wide audience. So far my main “achievements” (and once again I use this in the loosest of terms) have been to notify Virgin Trains that our carriage had been plunged into blackness on the way home from a London trip and to organise impromptu special assistance for the MIL when all other lines of coms had failed.  Nonetheless, I am determined to keep going and use it to follow others, link to my blog, raise awareness of undiagnosed children etc etc.

It was a pretty full on day and we finished at 6pm with the only decision to be made thereafter as to how “Out out” we wanted to be by the end of the night. Our SWAN UK co-ordinator dispatched us with thanks and a clear message that we were no longer her responsibility with more than a sigh of relief.

We had a meal booked in a well known Pizza establishment…handily located right next to the choppy waters of the Birmingham canal with no railing or fencing surrounding it whatsoever. Tottering along in my “out-out” high heeled shoes (the Minx has already ear-marked them for future use!) and not at this point having had even a sip of wine, it was a pretty sober inspiring thought that I did not want to end up having an impromptu swim post meal….Nonetheless, I did “force” myself to have the odd glass, just to be sociable!

11;30pm quickly crept up and the sensible ones amongst us (i.e. not me!) decided to go back to the hotel, leaving the rest of us to continue our frivolities in a bar where the volume of the music threatened to make my ear drums bleed.

I must admit it was quite a relief to leave in the end and brave the chilly walk back, enjoying what can only be described as the spectacle of Birmingham “yoof” out to party on a Saturday night. I know I am officially old now as not only was the music far too loud but on more than one occasion I found myself goggling at the skimpy attire and scantily clad folk, muttering that they would catch their death of cold and thankful for my full length parka coat, skinny jeans and jumper…although the sparkly shoes still made me feel vaguely rebellious 🙂

Looking forward to posting more and using my new found knowledge to bling things up in the future, I bid you adieu for now. If you would like to, I now have an FB page you can follow: Definitely Not The Waltons

*Erm, aware last 3 blogs have had shoes in the piccies…..maybe I can get a shoe sponsorship deal?!