So I had a bit of a hiatus.  I must tell you Voyeurs it was not intended nor wanted and it has consumed every aspect of my life.  When you don’t know someone in real life and you get to know them online, there can be disparity between those two realities, not that one is any less real than the other (in my case anyway), but I can hide things that are painful to show, or that I already know you won’t be interested in.

The past few months, maybe even the whole of 2018 has been hard.  My son has a super rare chromosomal abnormality, he’s one of five people globally to have it and the last to be diagnosed, meaning that since he was born, not a single person in the world has been diagnosed with it.  Because it’s so rare, there’s very little known about it on a professional level, meaning that the parents of these five children are relied upon as global experts, but are also demeaned, harassed and criticised endlessly by health professionals in LDCAMHS who believe that whilst they’re unable to pronounce it, they might know more.

You may have seen from my Twitter feed that Bo and I made the decision around a year ago to remove Plankton from his special school in the North East after an assault charge, it’s a really tough thing to do, withdraw your child from education with absolutely no intention of home schooling, effectively losing a year of education.  I don’t regret losing that year of education, the school were barely a babysitting service, the spelling, grammar, and all round attitude of the teaching staff there was questionable at best, being out of school and coming on assignments with me provided him with a far richer experience, and he definitely increased his reasoning time instead of simply punching me in the face when I spoke to him.  But I would like for him to have positive social experiences with other children, sadly this just doesn’t seem possible.

Anyway, back to the hiatus.  As a family we’ve been in and out of court to ratify our decision and I guess rubber stamp it, the intention was to move him from one school to another but apparently it’s not as simple as that when you have a child with multiple complex special needs and disabilities.  First you have to jump through a hoop, while it’s on fire, then they set you on fire, and make you juggle 26 knives, which are also, you guessed it, on fire.  It’s a flawed, tiresome and frustrating process designed to benefit only the Local Authority.  We fought, we became tough on the outside, fireproof almost, but weak on the inside.  We cried, we slept (sometimes), and we were fucking hated for it.  We were lambasted, dragged through shit and made to relive the worst things that had happened to us as a family, in a courtroom, right in front of the people who wanted to weaken us.  It’s a shitty hand you’re dealt as a parent to a vulnerable child, made shittier by Bo’s family completely abandoning us and the total lack of interest or concern shown by anyone in my paternal family.

See Plankton makes a rod for his own back, he seems naughty, even hostile and to some extent I guess by definition his behaviour is in those categories.  However the difference between naughty children and children with autism or any other learning disability is choice.  Like you or I can choose between right and wrong, and even to some degree, where the line between both might sit in any given situation.  Plankton doesn’t have any understanding of any of that, he’s verbal and polite and that leads to an assumption of intelligence and / or comprehension.  In reality it’s nothing but a bunch of learned phrases through experiences shared with us, it’s both a good thing and a bad thing.

We spent endless sleepless nights, way too many to count, preparing, collating and numbering reams of evidence from us, genetics, health professionals and LD cases in the States ready to take to court only to be adjourned because the Local Authority had failed to submit their evidence within the specified timescales.  We both lost a day’s work and income for that and as we left court the Local Authority representative advised us in the car park that we had no chance of winning.  I’ll be honest, I was more bothered that I’d wasted a Valentino dress for 20 minutes in front of a judge than some smug faced woman in trousers two inches too short trying to serve me my come-uppance in a parking lot.

Our new date was set for two whole months later with caveats, a meeting must take place between relevant parties, more evidence should be submitted to fill the two month timeline in between adjournment and the Local Authority should stop acting like dicks.  I mean that wasn’t one of the actual caveats, that one was mine.

When we finally got our day in court, and it was a day, I won’t bore you with the details but we were awarded a place in the senior school we’d requested.  Now this isn’t by any means a huge win.  When you have a child with a learning disability schools which are geared up to meet the needs of every child on roll are non-existent.  You basically take your star shaped child, and force it into a triangular school and hope that he or she doesn’t fall through.  It basically meant we had five more months at home with Plankton because the Local Authority had “forgotten” to file a case with the Home & Hospital School Service leaving it too short notice for the court to intervene and arrange statutory primary education.

In the midst of all this, the stress was swirling like a cloud of dust and both my Ehlers-Danlos Syndrome (EDS) and Fibromyalgia (Fibro / CFS) flared hugely resulting in me being admitted to hospital.  As the primary carer for a child not currently in school, this causes huge problems for everyone and I was advised by the NHS, yeah, those people responsible for helping us to manage our health, advised me to visualise my pain, put it in a box and forget about it.  If I could do this, I would be pain free.  No. Fuck right off.  That’s not even a thing?!  I’m still in that flare up, it’s been with me so long it’s now categorised as a “phase”.  The imaginary pain I was having has resulted in me having to have two minor surgical procedures, two cortisone injections, and one planned major hip surgery.  Pretty fucking big box to fit all that shit in.

If I sound bitter, it’s because I am.  There’s only so much shit one person and their family can take from external sources before they break, physically in my case.  So yeah, that hiatus, it wasn’t self care, or self love, it was a shit storm piled on to a very vulnerable family in a pretty unique position, by County Durham Local Authority and the South Durham arm of LDCAMHS that forced us to retreat and re-evaluate.

More over, we spent a whole week prepping a reluctant Plankton for his much anticipated first day at school, we battled and won our case to have transport provided just like every other disable child in the country, and even invited the taxi driver and chaperone over to meet in advance.  We had a super positive meeting where they told us they’d have music ready (Foo Fighters and Nirvana at Plankton’s request) and he definitely seemed more relaxed about it.  When the first day of school rolled around they didn’t show, we called the Local Authority to find out what the hold up was only to be told that the driver and chaperone had given immediate notice straight after meeting him, saying it was going to be too difficult to manage.  Nobody informed us, we sat waiting with him in his school uniform for that taxi then had to break it to him that they weren’t coming.  Long story short, a week and two days later than planned, he finally made it to school and I’m pretty sure he’s given them hell.

Overall, 1 out of 5 experience, would not recommend.  Although if you are going through something similar, please feel free to get in touch if you need someone to vent to, otherwise you might just implode.

Pixie