I used to work for large American Corporate Bank, in England.  It was full of very talented, capable people but also quite a few who simply thought they were.

To make the dull meetings a little more entertaining and maintain our waning attention, my more mischievous friends and I used to engage in a game of ‘bullshit bingo’, marking our page every time someone used one of the current ‘buzz phrases’.  You know the type I mean, those phrases that some numpties think sound good but don’t actually mean anything of any value. 

In the new abbreviated world, that we now seem to live in, I have needed to adapt my ears to a new kind of language, again much of it meaningless to my forty-something brain. 

Deciphering my children’s text messages or conversations to try and pick up on what they may mean.  Fortunately, none of my children have never watched TOWIE (The Only Way is Essex), so we’ve avoided that particular destruction of the English language and are never “well jel” and the only “totes” we use, come with handles.  I’m afraid though I have succumbed to the use of many acronyms, often having to ask my tween daughter to translate. 

The International FFS Sign

My absolute favourite of all, and invented by and for middle aged women has to be FFS.  This darling little phrase is my saviour of sanity on many occasions, and uttering it under my breath or in a speech bubble in my head has helped me to maintain composure when dealing with many a total PITA (Pain in the Arse). 

As a parent to a child with special needs, the use of Acronyms is mind boggling, often to the point of making me d.i.z.z.y.  I have become quite well versed in this new language in recent years and feel I could put it on my CV along with intermediate German and basic French.  Although, I’m not sure if knowing how to order a large glass of white wine whilst on a city break in Paris, is maybe a little too basic for what French speaking employers are looking for!

I’m afraid much like a parent of a new-born, dreamily starting every conversation with a new tale of their precious and shiny new offspring, I am a total Autism bore and somehow almost every conversation I have, meanders towards it at some point.  I see my friend’s eyes glaze over as a vague look of ‘oh no, not again’ flashes across their faces. 

Although if Patrick’s behaviour has been particularly challenging, they may find my stories a bit more interesting. as their woes of “well Amelia just won’t eat peas anymore” never measure up to the wild world of my trainee ninja! 

Most of my good friends, know the SEND (special educational needs and Disabilities), acronyms by now, as they are so used to me using them, but I have to remember that to most people it is complete mumbo-jumbo that I am speaking, as fortunately for them, they don’t live in the crazy world I inhabit.

But as 1 in 65 school age children in Ireland are now diagnosed with Autism, never mind any other syndromes or conditions that often go along with it, it’s a language we all will, no doubt become familiar with.  So, here are a few of the basics to get you started:

CAMHS – Child and Adolescent Mental Health Services

ASD – Autism Spectrum Disorder

ADHD – Attention Deficit Hyperactivity Disorder

OT/PT/SALT – Occupational Therapist/Physical Therapist/Speech And Language Therapist

SENO – Special Educational Needs Officer

SNA – Special Needs Assistant (at school or preschool)

IEP – Individualised Education Program/Plan

STIM – Self Stimulatory Behaviour (e.g. rocking, pacing, tapping, screeching)

DSM 5 – Diagnostic Statistics Manual Version 5 (the bible of diagnosing any SEN)

But as with any language, there is always a particular dialect depending on what part of the special needs community you are from.  I sat down with Patrick’s Clinical Psychologist a few weeks ago, to be told that Patrick presented with a particular kind of Autism profile.  OH, that was new, I thought Tinder was where you would find profiles, and at 11 he’s a bit young for swiping in either direction! 

But, the golden fact of Autism is that, everyone’s Autism is different to them, it is unique and presents in different ways.  Patrick, for example, has rarely struggled verbally, that is one of the reasons why, his diagnosis was so delayed. 

Patrick has a PDA and ODD profile, Pathological Demand Avoidance and Oppositional Defiance Disorder.  Without blinding you with science, what that basically means is that Patrick gets hugely anxious, and I mean absolutely terrified, by so many of the basic things we do every day.  Things that most of us take for granted, he will avoid doing whatever it is, by whatever means necessary.

Going to school being one of the biggest challenges he faces.  Being as fearful about going to school as I would be about wrestling a crocodile – literally.  This is very hard to understand, as he loves his school, his friends, his teachers and his beloved SNA Roisin, who is providing 121 support for most of the day. 

But still, like so many Autistic children, it causes him an insane amount of anxiety.  On Thursday for example, he punched me in the chest and threatened me with a screwdriver, to make sure I was crystal clear that he was “NOT GOING TO SCHOOL!” This is just how anxious he was and the only way he knew how to communicate it to me.

Secondly, Patrick will often do the exact opposite of anything you want him to do.  To the point of seeking out extremely annoying, harmful and unpleasant behaviours to get a reaction, particularly from me, because I am his ‘safe space’.  This behaviour is NOT because he is bad or naughty, but his brain actually, needs, the release the negative reaction brings, simply to be able to function.  Autism is very complicated!

Sadly, as part of his particular profile, Patrick struggles with the worst acronym of all.  SEND VCB – Special Educational Needs and Disabilities related, Violent/Challenging Behaviours.  That’s a huge title, and a huge part of our lives.  This is the part of life with special needs, some, but not all, people experience, that you will never see on a poster of a cute child with some syndrome or other. 

Advocating for my family

This is the part of special needs that is understandably, kept a secret by so many.  Personally, it is something I am open about, in fact I try to raise awareness about it.  On Tuesday afternoon I will be interviewed by Ray D’Arcy on RTE Radio 1 to discuss our story and the woefully inadequate services and supports.

Many people will no doubt wonder why I will do thi. This is me stepping out of line and refusing to accept what we are being given. I am fighting for all of my children and for those who also find themselves in this situation, but do not have a voice.

Because this is not Patrick’s fault, this does not make Patrick a bad person and most importantly, this is something that can be supported and massively reduced with the right therapy and the right adjustments in place in the wider society – but right now that is not happening and I don’t think it ever has!

In my experience so far, in the UK and Ireland, and no doubt around the world, it suits governments perfectly well that this part of Special Needs is not discussed, because then they don’t have to fund support for it.  In fact this week alone, the Irish Government cut €20m from the Disabilities Budget, yet gave golden handshakes to retiring politicians from a vast €22m pot of gold and also gave €20m of a rescue package to the Football Association of Ireland. Do I sound bitter? Probably because I am!

They choose to leave families, like ours, struggling with it, on their own, figuring it out with their TRIBE (not an acronym, but what you call the invaluable group of other SEND parents who are your lifeline).

To be honest, if you have read my book or follow my blog regularly then I’m sure you’ll understand why, the biggest acronym I used in the last decade , and still is; WTF!  Whilst my favourite acronym is still FFS, my most commonly use is definitely WTF. Just in case you are playing acronym bingo.

We all know what that one means, and we all need to be asking wannabe politicians, that call to our door,  WTF they are doing to support people with disabilities in meaningful ways and WTF are they thinking, making an already difficult life harder, almost to the point of being intolerable and even dangerous.  

W T actual F?!  Just maybe substitute the F for Flip, you don’t want to upset their delicate little ears. 

Now back to that little bit of French on my CV, un large glass of white wine s’il vous plait!

For anyone impacted by or experiencing SEND VCB there is an excellent, closed (private) Facebook group of the same name, that offers a safe space for families in this situation to talk, exchange ideas etc.  It has been my lifeline this year.  It is run by a lady with lived experience of SEND VCB, who on her website www.yvonnenewbold.com offers explanations, solutions and support – but never judgement.

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