Use your words

We have spent the last 6 years teaching our daughter to talk. Actually, that’s an exaggeration: we spent 3 years wondering if our fae child would ever speak; 2 with various speech therapists, school teachers etc trying to get her to talk, encouraging her to talk and dealing with her frustration of not being able to talk; only for the penny to drop and her to start talking nonstop, and the world finally starting to become easier. 

Then, in late October, she went through some sort of cognitive shift as happens with all children, and she started stimming significantly more. She also started to make verbalisations known as echolalia. The fae father wants it to be known that he isn’t convinced that she isn’t trying to use echolocation. It would not surprise me to find that this is true, as she spends an inordinate amount of time with her eyes shut walking around bumping into things. If it is echolocation, then she isn’t very good at it. Then again, she isn’t very good at walking around with her eyes open, either, and is often covered in mysterious bruises. 

I digress. The point is, that since October she has used echolalia as one of her preferred ways of stimming, and since you can’t talk whilst sounding like an old school dial tone she has taken to using Makaton and sign language as her preferred communication method. 

This has a few significant drawbacks. Firstly, not everyone knows sign language. In fact her own father and I only know a few signs between us, and most of those boil down to ‘no’, ‘stop’ and ‘sit down’; in fact, all the signs that she will want to ignore. Her grandparents don’t know any. More importantly, if it’s not in a Christmas song (specifically “Santa Claus is coming to town” or “Rudolph the Red nosed reindeer”) she doesn’t know them either – and I’m not too convinced by some of those either. 

So, all in all, this genius idea of hers is leading to a lot of frustration on both sides, and she continually makes up signs and meanings (no, you can’t use the same sign for ‘daddy’ as you do for ‘fish’) and some interesting if completely wrong ideas. My suggestion that she went back to using her words and telling me what she wanted was met with a look of scorn normally reserved for when someone suggests we don’t watch the same TV show on repeat, that she has something other than porridge for breakfast, or something equally ridiculous. 

I guess I’m taking a course in sign language. 

Realigning the world view

This week, my daughter woke up on Tuesday 19th November and announced, with the surety of a small child in a superhero outfit, that it was, in fact, the 17th. When corrected she growled, stamped her feet and then told me I was wrong. Realising I was heading down a rabbit hole that I would not be able to climb back out of, I agreed with her. After all, what’s a couple of days between friends, or in this case fae children? This did not mollify her, and she grabbed her iPad to show me I was wrong. When it confirmed my reality, not hers, she had the meltdown I had been hoping to avoid. She screamed at it, she checked my iPad, my watch, phone, the TV (why do so many things display the time and date these days?!) and when they all said the same thing she became inconsolable.

This isn’t because she was mad about being wrong. 

Let me correct that, this wasn’t solely because she was mad about being wrong. My fae child has a hyperfixation with numbers. I know a lot of neurospicy people have what are known as ‘special interests’ but that fails to convey the lengths and depths of focus that can be applied in their chosen field of fascination. My daughter will count anything and everything. She won’t stop. She will track every number she can and this isn’t just an idle interest. Numbers are regular, predictable and will always do the same thing in the same circumstances. 1+1 will always = 2 (I’ve been asked to put in here by some of the more pedantic grown up neurospicy family members I have that in base 10 1+1=2). So, when she had lost track of the date, suddenly the numbers were not doing what she expected, in the pattern they should: this wasn’t a little thing that could be shaken off, like most of us would with a shrug and ‘I never got the hang of Thursdays’ comment whilst trying to see if the amount we drank at the weekend would account for the lapse. To her, it meant numbers had broken and the world no longer made sense. 

It was only when she was sat down in front of a year planner (if you have a fae child get an a1 year planner, trust me) and had the days explained to her from where she lost track – in this case Children in Need Day (which fortunately on our planner had a pirate teddy bear drawn on it) and was able to account for each day and what she had done on it, that she could accept that actually the numbers WERE still making sense and she had simply gotten mixed up. 

This accepted, the world realigned, and breakfast could commence. But seriously, it’s not what you need at 5am on a Tuesday morning. 

It never rains

But, on occasions, it pours fire and brimstone with a side of erupting volcanoes and magma pools everywhere. 

Some days, I do second guess myself: do we really need all the provisions that I have fought to get for my daughter? I mean we have a lot: blue badge, respite care, special school allocation, to name but a few. 

Today was not one of those days. Today her grandparents picked her up at three in the afternoon. By 4:30 she had a tantrum because their mind reading powers had failed, and they hadn’t realised that she would want ice cream at their house. Having never wanted ice cream with them before, and positively turned her nose up at it when it had been offered. Today though it was obviously their fault for not picking up on the mental signals that she was giving out that she expected there to be ice cream. So she then demanded my immediate presence. 

I arrived 10 mins later, because unfortunately I don’t have access to a Star Trek transporter, so have to make do with a car. Ten minutes was long enough for her to forget all about her demands for me and ice cream until it was mentioned that both were wanted. 

She also managed to convince her school teachers she was tired. My daughter is NEVER tired. She can go four weeks on 30 mins of sleep and still run rings both figuratively and literally around people. So on careful interrogation I discovered that they had changed her PE lesson to dance. Not the type of dancing she is used to where they climb on each other and make interesting pyramids but the more sedate country dancing way of prancing around with flags. So she had Noped out of it and refused to participate.

Needless to say, today was not her day and with it being Children in need and hence off routine with regards to uniform, she was already out of whack. By the time I picked her up from her grandparents, she was running on tomorrow’s spoons. So, arriving at the gym and finding all the disabled bays in use by people that don’t have blue badges and were frankly just being lazy (Come on people you are going to a gym but you can’t walk the extra 10 yards of car park?!) really didn’t help. My daughter has an aversion to walking on tarmac. She can walk on yellow lines and white lines but not black tarmac. Getting her into the building from the disabled bays is a challenge, from anywhere else it’s almost impossible. I had to wait for one of these asses to leave so we could park. By which time she is frantic that she is going to be late to the class that we arrived half an hour early for. No amount of trying to explain we have 30 minutes will help, as she has no concept of time. 

It was a relief to get into the building, and for the time for class to come around. Only to discover in the last 20 mins she has misplaced her emotional support stuffed animal. She has been to the changing rooms, soft play, the car park and basically everywhere on site. We don’t have time to look. I finally convince her to go to her cheerleading class and I will look for the stuffed lamb. Which I do, but I don’t find it. I even ask at reception before resigning myself to the meltdown that will come when I collect her. Only to discover it under the chair where she was sitting. 

So do we need all those accommodations for her autism? YES and I need a bottle or wine. 

The correlation between intelligence and common sense

I have long held a belief that there is an inverted correlation between academic intelligence and common sense. I haven’t done any study, I just have my own observations to justify it, and every time I mention my theory to people they tend to agree. I may have mentioned in the past that I have a brother and a sister-in-law that both hold doctorates in STEM subjects. Indeed, my brother I believe qualifies as an Oxford Don as he used to teach there. He has always been gifted in the Sciences, with degrees in maths and physics and a PHD in particle physics. My sister-in-law has a PHD in electrical engineering. Both my parents were chartered scientists (my father was also a chartered engineer) which meant with my meager BSc(hons) degree I am rather the weak link in the family. 

That said, all of them put together have less common sense than a concussed duckling. Despite having a degree in physics my father thought that putting a CD in the microwave was a good idea (spoiler – it isn’t), my brother and sister-in-law dismantled a microwave (what is it with microwaves?!) to find out why it wasn’t working and neither of them checked the fuse before I suggested it. As for my mother; she once attempted to eradicate a woodworm infestation in a piece of furniture by dousing it in ethanol and smacking each worm on the head with a toffee hammer when it drunkenly appeared on the surface. That didn’t work either but it did burn well on bonfire night. 

So what has this got to do with raising fae? Well, there is a long held myth that all ASD children fall into one of two categories; they are either low functioning which means that they will need support for the rest of their life, have little ability to do anything for themselves, and won’t talk or socially interact. Think Ralph Wiggin on The Simpsons. Or they are high functioning which makes them extremely intelligent, have super intuitive memories but limited social skills – there are endless examples from TV here e.g. Sherlock in the BBCs modern adaption of the same name, Dr Shaun Murphy in the Good Doctor, Temperance Brennan in Bones, and Sheldon Cooper in Big Bang Theory. 

None of these are particularly good representations of ASD as it is a spectrum and thankfully the ideas of high and low functioning are falling out of favour, toward the idea of levels which I’m still not so keen on – but as I can’t really suggest a better approach I will just have to live with it. It may be because there are only three levels and I don’t feel this is enough especially when Asperger’s syndrome and Autism are now lumped in the same bucket. 

My fae is difficult to level – she is somewhere between levels 2 and 3. She stims continuously, she will often exhibit echolalia. She can, however, mask when she wants to – she can interact with her peers, but that behaviour is mimicking, because she has the intelligence to work out what is expected of her. She has specific interests and hyperfixations that rule her waking moments: one of the big ones has been Paw Patrol, which she has been taken with for 4 years.

So she can instigate interactions with neurotypical kids – putting her at level 1 – but she needs constant support and stims. That’s level 2. BUT also needs speech and communication intervention. She relies on Makaton signing to support her speech as it’s underdeveloped, so that’s level 3. 

Needing round the clock supervision is also level 3, and she does need it, or she will find things she shouldn’t do to do, and new and impressive ways of hurting herself. 

So intelligent, yes, but also lacking any common sense. So she fits my theory as well, even if she is the hottest chili in the spice rack. 

Stim away the happy

In previous years, our fae child has found fireworks completely overwhelming: she has needed ear defenders and places to hide from them, as she has not coped with either the noise or the display itself. In the past few weeks, however, she has gone through something of a cognitive shift. It’s not just me who has noticed: her teachers agree that she is stimming (if you don’t know what stimming is see the glossary) more – and by “more” I mean “continuously” – and she is also not masking some of what I can only describe as the more stereotypical autistic traits. 

Anyway, last night was November 5th. In the USA, I know this meant the end of the free world as they know it, but here in the UK we celebrate the time when someone tried to blow up our parliament. I think we are supposed to be celebrating that they failed, but opinion is divided on that.

We do this with fireworks. So every year pets and children bury their ears in soft furnishings while the rest of the country set fire to effigies of people they don’t like and let off small incendiaries. For the first time, this year our daughter wanted to participate. We had only a few sparklers, which she was happy to hold but weren’t really what she wanted. But we were saved from a complete catastrophe by our neighbours, who must have bought an entire fireworks department. Their display rivaled some professional shows I have been to, and lasted a good 15 minutes. During which time I watched as our fae ‘eeee’d and hand flapped and jumped her way through the entire thing. It was amazing to watch and filled us with joy. 

The only take-home point we made was, don’t give a stimming child a sparkler as she can’t control the hand flapping and she did at one point set fire to the lawn and almost take her father’s eye out. 

Stop this Sketch

I am of the firm belief that I am raising a cartoon child. If you are unsure if you have a cartoon child there are things you can look out for that will tell you for certain. 

  1. Has your child ever ‘reached offscreen’? Think Wylie Coyote reaching for an Acme product in Road Runner. My daughter does this fairly often. The most memorable occasion was in a big blue supermarket, where we were standing in the toy aisle, discussing what we needed and my husband said ‘chocolate’. She promptly reached onto the shelf between the playdoh and Paw Patrol figures and handed him a bag of Smarties. We to this day have no idea how she did it. 
  2. Does your child take comic timing to a whole new level? Last night, she was being a baby giraffe in the bath (don’t ask me, I just live here) when we needed her to get out. She was reluctant. My husband (I’m sensing a common factor here) urged her out with ‘Quick, before you turn into a baby elephant again!’ There was a gasp of ‘oh no’ and she literally sprang out the water like a penguin onto an ice floe. I have no idea what happened. 
  3. Are they easily distracted? My husband (again I’m sensing I know what is the cause of my cartoon child) managed to distract my fae out of a tantrum with a cry of ‘look, a distraction!’ She immediately stopped crying and perked her head up like a meerkat on guard duty and shouted ‘where?’.
  4. If looking for something, do they have all the sense of a concussed duckling when looking for it? My daughter lost me at a local gym we frequent. She went looking for me on the ceiling.

If you answer “yes” to all these questions, then you too may have found yourself living in the surreal world of raising a cartoon in the real world. The good news is that, like their on-screen counterparts, your child is highly robust. The bad news is, like their on-screen counterparts, you are now living in a sitcom, there are no rules, and your child will not notice when they are actually injured (my fae tried to shake off a broken arm) but will act as though you have immersed them in lava if you try to cut their nails. 

Next up, signs you have a cartoon spouse…..

Tell me why

I don’t like Octobers. 

No, seriously, if anything is going to go wrong it will happen in October. I don’t know if this is just for our family or in general, but the shittiest things seem to happen to us in October and have done for decades. I can recall the exact date that I decided this. It was 26th October 2011. I will remember this date indefinitely because not only was it my brother’s birthday (and I had failed abysmally to get his present in the post – it was in fact lost in the back of the car, which I will explain shortly), it was scant weeks after my now husband had come off his motorbike and broken his collar bone, the day after we managed to dive together (actually the last dive I think I have done) and the day I totalled my first car. Which was a shame, because not only did I like that car, but I wrote off several hundred pounds worth of dive computer, the aforementioned present, and almost wrote off said future husband and myself in the process.

It turned out that not only did I have significant internal haemorrhaging (I was the colour of an overripe aubergine for the remainder of winter) several lumps of windscreen were removed from now-husband’s head (they missed one and it’s still there), he broke a thumb and I broke my sternum. 

Whilst stationary in the hospital car park a few days later from having his checkup, someone reversed into his car.

So yeah, I don’t like October. 

This October, we gained and lost two kittens, all have been sick as dogs, the fae has been waking at 2am, the car we have just cost us £700 in diagnostics and new boots, and I still haven’t organised my brother’s birthday present. 

So, seriously, if anything is going to go wrong, it will in October. Next year I’m hibernating until November first. No wait I love Halloween so yeah I’m waking up at midday on the 31st. 

You’re not the only one

I have recently decided that I am going to write a book, dedicated to the memory of my father. On the suggestion of my husband, I am titling it ‘Maybe the psychos were right?’

This has come about by the sheer lack of consideration shown by the average person in a number of situations, and as time goes on I have found myself increasingly less tolerant of it. The most recent example was on a rare occasion that my husband and I managed to get out for a meal, we found our enjoyment spoiled to the point of moving tables by other guests. To set the scene, and why my patience may have been even thinner than it’s usual: our fae had been at home with a DV bug for a number of days, waking me at 2 am and needing pretty much 24/7 care. We had, that weekend, adopted a pair of kittens (that as of today had to be sent back to a rescue centre as a vet informed us that they were too sick to be adopted in the first place) and both myself and my husband were ill. 

To put it in the vernacular, we were not feeling very demure, and you could take your mindfulness and shove it where Sigma don’t shine. So, when a neurospicy adult insisted on playing fucking xmas music on a poorly rendered synth at full volume, it pissed me off. Look, I get that it’s easier to let your kid distract themselves with a hyper fixation but when you allow them to affect everyone in the restaurant, you’re just an ass. We have a child who would love to play on her Ipad during meals, but we have a rule; no tech at the table. She has a close friend who can’t eat without his, they have another friend who can’t stand the sound of chewing and needs to drown it out, and another that needs silence and somehow we can accommodate all of them to eat together. If we had one parent who felt that they had an entitlement to allow this sort of behaviour, then none of us would be able to feed our children. It’s completely unacceptable. If you cannot eat out without the person you are caring for disturbing everyone around you, then you don’t eat out, it’s that simple. 

If they need to make noise, then you sit in the children’s areas where noise is not only expected but encouraged. If they can’t cope with that, it is your responsibility to deal, not to make it everyone else’s problem. 

Frankly, we look after our own child without inconveniencing anyone, and I expect everyone else to do the same. If you can’t, then you need to accept that you need to make other arrangements. I haven’t been on holiday or had an evening meal out in 6 years. I know that my daughter wouldn’t cope. So yes, I practise what I breach. I have also given up my career, freedom and sanity (to be fair that was on its way out anyhow) for her. 

So no, you’re not the only one in the world who needs accommodations, but that doesn’t give you the right to impact those around you. I’m seriously considering ways to incapacitate devices that are at antisocial volumes in future. 

Do we have to have these arguments?

And other stupid things I say. I don’t even know why I say them when the answer is obvious and repetitive. 

I am aware that having a child is like someone holding up a small frustrating mirror displaying your worse qualities and then telling you that you are not allowed to strangle it but the one we have seemed to get a double helping of smart ass and not only our combined stubbornness but also all of her ancestors as well. Trying to put her to bed is a form of mindfulness training that should be banned under the Geneva convention and don’t get me started on brushing her teeth. 

If I have to hear about how ‘spicy’ the mild mint toothpaste is one more time I will scream and I am, to this day I’m not sure what she expected the strawberry one to taste like but apparently it wasn’t strawberries. 

Still reading a bedtime story should be straightforward enough right? Wrong. We have a set of books that, as I imagine most parents do; that we can recite from memory. These range from the ridiculously short (The Flying Bath) to the ridiculously long (I had trouble getting to Solla Sollew) to the plain ridiculous (The Rhyme of the Ancient Mariner). We choose the book based on the time we have available and how awake she seems. One of the books starts “It’s morning, everyone’s gone”. I dutifully started my recitation only to be interrupted by a chirrup from the bed of 

“But what if it was afternoon?”. Now that kind of question can really throw one. When I informed her that the book was set in the morning, she huffed and insisted 

“But what if it was afternoon?”

I told her I didn’t know, this family may have been in and therefore the bath couldn’t have gone flying which would have been bad news for the kangaroo, bees, baboon and fish. Also the pig would still need a bath.I then tried to continue. This too wasn’t accepted as it wasn’t a definitive answer. So once again four words into the story

”But what if it was afternoon?” 

At which point, I sighed and read Superworm instead. 

Why do I have to have arguments like this? More importantly does anyone have an answer because I haven’t dared read a book with a definite time frame since. 

Why wont you talk to us?

One of the most frustrating things about raising a fae child is that they will not – or, more accurately, are unable to – communicate accurately with you. 

Last week, I was reevaluating every parenting decision I had ever made to try and determine where I had turned my beautiful sweet natured child into the spoiled brat of a daemon that was coming home from school each night. It was exhausting both myself and my husband, and making me dread having her in the house. She was having tantrums over anything, real or imagined. Seriously, I can deal with things I can reason with even if I can’t see the problem – like for example; at her grandparents house they have three cheese graters of various sizes. Whenever she comes across three of a kind that come in small, medium and large she automatically assumes you have a ‘daddy’ a ‘mummy’ and a ‘baby’. This particular day she had noticed that they also had a nest of three tables, which were dutifully categorized in the same way. The problem came when she wanted to introduce the table family to the cheese grater family only to find ‘mummy’ cheese grater was missing. Well, not missing, but in the dishwasher as someone had inconsiderately used ‘her’ to grate cheese. The audacity. So, she informed her grandparents in no uncertain terms that this was not on and mummy grater needed to be found immediately. She also dictated that she could not be used for grating cheese. When questioned what they should use instead they were told a knife. When asked why they should keep graters they couldn’t use they were told ‘because they’re a family’. Somehow throughout this interaction I managed to keep a straight face, although I may have burst a blood vessel trying not to laugh. She completely baffled two adults with her insistence that this made sense. In her mind it did. It’s a strange form of gaslighting where she tries to convince you that what you know isn’t true is, because she genuinely believes it. 

In the end, she pulled the winning move of turning on the waterworks and her grandpa fetched mummy grater out the dishwasher, hand cleaned her (it?) and handed her across. The tears promptly dried like magic, and I explained that he had just fallen for the oldest trick in the book as she can make herself cry on demand. She will be winning OSCARs one day. At least there was a solution to this particular problem. 

On the other hand, when she was screaming that the elephant had been removed from her bed and what was she going to ride now I was at a loss. Gentle interrogation discovered that the elephant was her grey bedsheet. The only problem being that she doesn’t have a grey bedsheet. It’s blue, it’s always been blue, she’s never had a grey one. So I have no idea how to fix this. Pointing out the her new bedsheet was white and showing her pictures of white elephants was a non-starter, but we did try.

As it turns out, these and all other insanity last week had a very specific cause. On Sunday, she lost a tooth. Apparently it had been loose for a number days and she’d not mentioned it. So the chewing, tantrums and generally awful behavior could have been solved with Calpol.

She has a cold now, but when we are through that I think we will have our lovely little girl back. At least I hope we will.