Imaginative Play

There is a myth amongst neurotypicals: that fae children do not engage in imaginative play. How I wish this was true. My daughter weaponises it. She loves nothing better than to drag you into her world of make believe, only to slam you out of it with a bump. I say “bump” – really, I mean more like “three car motorway pile up”. The latest victim of this was the dentist, who, in an effort to make her more comfortable with the idea of having fluoride applied to her teeth, offered to do the process first to her little toy first. 

The toy in question was “Rocky” from the Paw Patrol – up until this point, she had been happily showing him around and demonstrating how the pup-pack opened, what tools he had etc. She had not said a word, which is not unusual: she is still prone to silence in situations she finds uncomfortable. The dentist held out the little toothbrush after engaging in the world of talking dogs for a couple of minutes and said ‘shall we do Rocky’s teeth first?’ only to be met with a look of incredulousness bordering on contempt and was told ‘No, it’s a toy.” These were the first words she had uttered throughout the entire check up. 

To his credit, the dentist just looked chagrined and said ‘well that told me’ and got on with doing her teeth instead. 

Her latest game in the bath is playing with a white, rubber duck that has a unicorn horn. She calls it a ‘uniduck’. This uniduck, we have been informed, can use its horn like a snorkel, and can’t fly on its own. But has a jetpack. That it activates by barking. 

If this makes sense to you, then please explain it to me. When I try to make it use its jet pack to ‘fly’ to the sink so I could clean it I was promptly informed I was being silly and it was a bath toy. 

She pulls this stunt on unsuspecting adults all the time. I would like to say I haven’t fallen for it, or at least I haven’t fallen for it more than once. I would like to say that but it would be a lie. 

That escalated quickly

So recently I posted about my daughter fracturing her arm at school. Three days later she came home with knees that looked like she had attacked them with a cheese grater. I asked her what happened and she shrugged and through a mixture of words and the medium of dance explained that she had been chasing bubbles in the playground that a member of staff had been blowing and fell over. She then stated she fell in slow motion and only landed on her hands a ‘little bit’. Close investigation with a magnifying glass on her right hand would have revealed a possible mark on her palm, but on her left her splint was frayed.

Sighing and rolling my eyes I shot off a message on the school app to ascertain how badly she had landed on her hands (I was a tad annoyed no one had mentioned the accident at the end of the day) and if I needed to get her arm x-rayed again as her arm was still fractured. I received a prompted message informing me that the teacher knew nothing of the fall. This was not a good start. 

I sent her a photo of the damage to her knees, assured her that there is evidence that she did indeed fall in school and asking for her to update me with what happened with regard to her hand and splint. I didn’t feel this was unreasonable as only days before she had been badly injured in school and with a maximum of a 1:2 ratio someone should be able to tell me what happened. 

The next morning was my birthday and it was a lovely day to have a condescending conversation with the class teacher that she was sure that my daughter hadn’t fallen in school and that no member of staff saw her fall and was I sure it happened there? If she used the phrase ‘you know what I mean?’ Once more I may have tried to jump down the phone and throttle her. 

So lets break it down my daughter had injuries consistent with a fall so yes she had fallen. 

She didn’t have them when she was dressed for school in the morning but did have them when I changed her for swimming when I collected her from school so yes I am sure it happened there

If no staff saw her fall that seems to be a problem on the school’s end not mine. 

So yes I would like a conversation with your deputy head, who happens to be your safe guarding lead. 

So this was escalated to the first step. 

This conversation happened later in the afternoon. The deputy head reiterated that not only did no one see her fall but it must had been in a CCTV ‘blind spot’. Again this seems to be a ‘them’ problem. When I pointed out that this was one in a series of unexplained injuries that my child had received in their care she stated she was unaware of the others. 

She asked if I wanted to come in and talk to her and the head. This is the head who had already assured me that she would make sure that all injuries on my daughter would be properly reported. So forgive me for not having confidence. 

I admit in a first of pique I posted on the private book of faces group for the parents of this class what has been happening and urged parents to chase injuries on their own children. I received the horrifying response that a child in my daughter’s class who should be under 1:1 care as she is highly vulnerable and physically disabled was left in a precarious position at the top of a small flight of stairs, where she fell down and fractured her neck! 

What the hell is going on. There are only 10 kids in my daughter’s class and two in a matter of months have received bone fractures due to inattentive staff. 

I have now written to the governors and have a meeting scheduled with the chair on Wednesday. I will update on that but this can not be allowed to continue. These children are highly vulnerable, most are non-verbal some are unable to walk and they need more care not less. So I’m brushing off my flamethrower mouth and ability to light fires with emails. 

The missile I sent to the governors required me to have a nap after writing because it took so much braining to make it go but I’m sure it will come back to me. In the words of a famous philosopher: This means war.

That escalated quickly

So recently I posted about my daughter fracturing her arm at school. Three days later she came home with knees that looked like she had attacked them with a cheese grater. I asked her what happened and she shrugged and through a mixture of words and the medium of dance explained that she had been chasing bubbles in the playground that a member of staff had been blowing and fell over. She then stated she fell in slow motion and only landed on her hands a ‘little bit’. Close investigation with a magnifying glass on her right hand would have revealed a possible mark on her palm, but on her left her splint was frayed.

Sighing and rolling my eyes I shot off a message on the school app to ascertain how badly she had landed on her hands (I was a tad annoyed no one had mentioned the accident at the end of the day) and if I needed to get her arm x-rayed again as her arm was still fractured. I received a prompted message informing me that the teacher knew nothing of the fall. This was not a good start. 

I sent her a photo of the damage to her knees, assured her that there is evidence that she did indeed fall in school and asking for her to update me with what happened with regard to her hand and splint. I didn’t feel this was unreasonable as only days before she had been badly injured in school and with a maximum of a 1:2 ratio someone should be able to tell me what happened. 

The next morning was my birthday and it was a lovely day to have a condescending conversation with the class teacher that she was sure that my daughter hadn’t fallen in school and that no member of staff saw her fall and was I sure it happened there? If she used the phrase ‘you know what I mean?’ Once more I may have tried to jump down the phone and throttle her. 

So lets break it down my daughter had injuries consistent with a fall so yes she had fallen. 

She didn’t have them when she was dressed for school in the morning but did have them when I changed her for swimming when I collected her from school so yes I am sure it happened there

If no staff saw her fall that seems to be a problem on the school’s end not mine. 

So yes I would like a conversation with your deputy head, who happens to be your safe guarding lead. 

So this was escalated to the first step. 

This conversation happened later in the afternoon. The deputy head reiterated that not only did no one see her fall but it must had been in a CCTV ‘blind spot’. Again this seems to be a ‘them’ problem. When I pointed out that this was one in a series of unexplained injuries that my child had received in their care she stated she was unaware of the others. 

She asked if I wanted to come in and talk to her and the head. This is the head who had already assured me that she would make sure that all injuries on my daughter would be properly reported. So forgive me for not having confidence. 

I admit in a first of pique I posted on the private book of faces group for the parents of this class what has been happening and urged parents to chase injuries on their own children. I received the horrifying response that a child in my daughter’s class who should be under 1:1 care as she is highly vulnerable and physically disabled was left in a precarious position at the top of a small flight of stairs, where she fell down and fractured her neck! 

What the hell is going on. There are only 10 kids in my daughter’s class and two in a matter of months have received bone fractures due to inattentive staff. 

I have now written to the governors and have a meeting scheduled with the chair on Wednesday. I will update on that but this can not be allowed to continue. These children are highly vulnerable, most are non-verbal some are unable to walk and they need more care not less. So I’m brushing off my flamethrower mouth and ability to light fires with emails. 

The missile I sent to the governors required me to have a nap after writing because it took so much braining to make it go but I’m sure it will come back to me. In the words of a famous philosopher: This means war.

There’s always something

So it seems I jinxed us with the last post. Seriously, I don’t know what I was thinking by stating that “everything’s going well” – obviously karma would strike me down with wrath. In this case, my poor little fae daughter fell during a PE lesson and fractured her arm. So, three weeks in a splint. I’m grateful that it’s not a cast, and that the hospital is on our route home from school. But seriously, what the hell do I do with a child who needs to be on the go all the time for three weeks while her arm heals!?

Not only that: despite being told numerous times that she will not report an injury of this nature, the school somehow completely missed the fact that she broke it. So the poor thing didn’t get any pain relief or support until we made it to the hospital. If anyone has the misfortune of having to attend a modern day A&E department, you have my sympathies. The first mission I had in this particular hospital was to find it. Granted, this is the major trauma centre for North Yorkshire, and as such is huge. But that to me means that sign posts would be all the more useful. Also, the only disabled car park with space was on the south side, but the department we needed was on the North side. The day my daughter had her accident was one of the only days of good weather that we had in spring. Being told that we had to walk around the outside of the buildings, where there are no pathways (they were cordoned off for building works) in the heat, with an injured child, is not my idea of fun. It took a good 10 mins to find A&E. Only to be told to go to children’s A&E. Then they sent us to urgent care as they didn’t have access to X-ray. 

When we finally were able to see the triage, I have to say the nurse was excellent, but bloody hell the hoops to get there are insane. Unsurprisingly, she sent us to x-ray but in deference to my daughter’s age and autism, assured me that the moment we returned to the department she would look at the films and we would be out in 5 mins. I think that because my fae was stimming out the pain she assumed that there was no injury and I was a hysterical mother. 

Another 15 min amble around the hospital, although this time on the inside, took us to the x-ray department. Where a tiny, handwritten sign scrawled on a corner of a notice board informed you to knock on the door to tell them you had arrived. Whereupon a confused-looking assistant would give a look along the lines of ‘why are you bothering me?’ before grunting at the waiting room seats and slamming the door in your face. 

After being left for a indefinite time where upon you will begin to think you have been forgotten and as such get up to relieve yourself (my daughter), find refreshments (me) or stretch legs (the lady playing DrawIt with us on my iPad) someone will call your name at the most inopportune moment and huff when they have to wait for you to scrabble together belongings, child and the like as though you have been keeping them waiting for hours. 

After the 10 seconds it requires to actually take the x-ray, you will be told to return from whence you came. This is where the real fun starts, because whilst there were signs TO X-ray there are no signs FROM X-ray. Not only that, the very helpful staff who stop to give you directions have never heard of the urgent care department. They offer to send you to A&E, or the children’s ward, or something called Same Day Emergency Care, or many other places, none of which are where you need to be. 

In my despair I tried to exit the hospital to walk around the outside again, back to the door I found the first time, only to find that the sign saying ‘way out’ led to a foyer with no visible exit. In the end I scooped up my daughter and snuck out an ambulance bay. Before you make the mistake of thinking this was by the emergency department, it wasn’t: this bay was by the patient transport bay, which is somewhere between the north and south sides. So I’m guessing east or west, not sure which I was very turned round. It was as you can imagine then with great relief I spotted what I though was a map tacked outside a building. Only this map lists three departments on it, none of which I wanted and none of which were signed near us so still no help. 

20 minutes later I arrived back at urgent care swearing under my breath with my poor daughter in tow. Only to discover the helpful nurse returning from break and so it was a relief to wave her down and be reassured she would look at the photos right now. So with a building sense of dread we waited the next 30 minutes whilst my fae proceeded to tell me she was; hot, tired, in pain and hungry. All justified complaints and there wasn’t a single sodding thing I could do about any of it as I had been told we would be in and out in minutes so didn’t dare leave the area and there wasn’t even a drinks fountain to get water. It was only at this point it occurred to me that I could have called my In-laws at the beginning of this debacle whom I am sure would have rocked up to our rescue with the refreshments I failed to find in the the sojourn from X-ray. Just as I dug my phone out to send a message we were called through and to the astonishment of the nurse she reported that my fae, despite waving her hand like she was conducting the 1812 overture had indeed fractured her arm. Thankfully not badly and she would only need a splint, which she promptly took us through to place on her. I was handed several pages of information and we were allowed to depart. 

I went home via the nearest vending machines thankfully providing ice cold water and snacks to the pair of us and plotting the death of everyone who didn’t tell me she had hurt herself this badly in before I arrived to pick her up. 

It’s not that she got hurt that really infuriated me, honestly I’m surprised she made it this long without breaking something but that I wasn’t called. I don’t care if she did it at 9 am or 3 pm if I had known I would had rocked up to the school with snacks, toys, drinks and frankly been prepared for the wait we all know is coming in any A&E department. I will be investigating why this didn’t happen and how a fractured arm went unnoticed. 

What I have learnt is there is no such thing as an A&E, there are at least 5 different departments in multiple buildings in many different wings of a hospital you may be sent to on arrival. So many that even the staff have given up keeping them straight. Perhaps this is how they are tackling waiting times? If you can’t find the department you can be on the waiting list? I also learnt that you can walk over 4000 steps around looking for the right place (doing this whilst carrying 26kgs of injured child is one hell of a workout)

Finally I have learnt that if you need them and if you can find them the NHS medical team are still excellent. 

The magic formula

For years… in fact, for over a decade, even before my fae was born, my husband and I have had a long running joke that “life will have to settle down soon right?”. It started with us moving in together, and then both finding gainful employment on the same side of the Atlantic. We then bought a bigger house, and as is the way of these things got engaged and married. At that point we were pretty sure things would settle down. Oh, how we laugh. Because, just before it could, we decided to have a child. For anyone wanting to have a calm life: don’t have a child! Whatever you think will happen won’t, and whatever you think you are prepared for, you aren’t. 

We knew the odds were that our child would be neurospicy. I mean, come on, look at the poor thing’s parents: neither of us fit into the bracket of “typical” on that spectrum, so, realistically, she never stood a chance. Despite knowing this going in, I don’t think either of us were really prepared for how profound some of her needs would be. Don’t get me wrong, I wouldn’t change her for the world, but a child that doesn’t speak until they are four and a half, and isn’t toilet trained until well after 5, is a trail. She still has what is classed as a limited food palette, and sometimes she lives off porridge and mashed potato for days at a time (that’s a significant improvement that started this year – up until then she lived solely off porridge).

She has more energy than a hyperactive mountain goat that’s had a jalapeño shoved up its bottom. She tends to view gravity as an option (that is frequently not selected) and seems to think that the laws of physics should not apply to her. I have spent the last 6 and half years preventing her increasingly-more-extravagant ploys to come to harm (always preceded by the words WATCH THIS!) in an effort to burn off some of this excess energy. It seems that we have stumbled upon the solution. It’s so simple! All you have to do is: make sure she is actively engaged in some sort of activity from the moment she wakes up (around 5:30am) until dinner time (6pm ish). I mean, how hard can it be?

All I can say is, the magic formula seems to be school, scheduled play dates at least twice a week, scheduled grandparent visits twice a week, after-school clubs, 3 sports clubs in the evening and  2 swimming sessions a week – and one more at the weekend. If this sounds like a lot: it is. Believe me, it is. But she is now running around, stimming out the happy, and is not melting down at the drop of a hat. She enjoys everything, and more importantly, the clubs and visits mean I don’t have to do it all myself – because before, I was, and frankly it wasn’t sustainable. Now, she is having fun, and I get some time to rest. This is sustainable for us and things are finally falling into a pattern, at least during the term times. 

It really does take a village

I don’t believe in reincarnation but…

I don’t believe in reincarnation. Or, at least, I didn’t, but my fae is making me question things. I firmly believe she has had other lives. In one, I think she must have been a collie. She will round up people and herd them together, whether they want to be herded or not. On occasions this is useful, as there are a couple of her friends who do have a tendency to run off at a moment’s provocation, and she is exceptional at finding them and returning them to the pack. Even the children with PDA stand no chance against her relentless badgering, and have learnt that it is just much easier to give in and go with her, because she will not give up. 

She will wash everything. Seriously, everything. Hands, sponges, food and on one memorable occasion popping candy. I think this is a hangover from her time as a raccoon. If she has it, she washes it. Trying to convince her that the bubbles in the bath are not going to appreciate being ‘washed’ was an exercise in futility. Also, if you sit too close to the bath while she is in it, you too will be washed. 

I have yet to find a way to stop her meowing around the house. If anyone has a solution, please let me know below. 

So, all in all, this seems to be her first attempt as a human. Maybe this explains why it’s being a bit of a challenge, as she seems to prefer to be small, furry, cute mammals. The good news is that, these days, identifying as one of those is not necessarily a sign of mental illness. Simply something that will cost a small fortune in costuming.

The balance between excited and exhausted

Our fae has more energy than your average 6 year old. I know that all parents say that. But when the teachers at the special school she attends; the disabilities social workers; and parents of other neuro-spicy children all look at her and, on first meeting, say in a slightly high pitched and worried tone “My, isn’t she active?” (See first meet bingo) you know you’re raising a live wire. 

Well, not so much a live wire, as the whole nuclear power station that runs on air and sunlight and happens to have all the self-preservation instincts of a perpetually-suicidal lemming when presented with a particularly attractive cliff.  

In an effort to find a less destructive outlet for some of this ….exuberance, we signed her up for our local David Lloyds gym. Well, not just her – I joined as well, because the spa is epic. I’m writing this in their version of the Diogenes club (seriously, if they didn’t close, I would move in). The DL kids club is brilliant – at first I think they thought I may have been exaggerating, but they humoured me, and came to meet her before signing us up. They reserved a lovely table in the club room for us to talk, which we never made it to, as our daughter saw the soft play, kicked off her shoes, and was off. So, they moved all their paperwork to the kids’ area, and tried to look comfortable form-filling on the 3/4 size chairs whilst she bounced around us. They tried to say hello as she walked over, only to look a bit disappointed when she gazed through them, grabbed her father’s hand, and marched him off to explore. 

I did tell them not to take it personally – she was in a new place, and it WOULD be investigated thoroughly. At which point, they did agree that she would need a care plan, and went off to get one. Well, they would have done – but at that point, she returned, and without a by-your-leave, settled herself on one of their laps so she could colour in the sheet in front of them. Purple – the whole sheet. She coloured it purple, handed it over, and then took my hand to show me there was a contactless charging point for my phone and I was to demonstrate how it worked. 

Still, they have been excellent with her, and she loves it. She attends at least two, and, where possible, three sessions a week – she bounces in, has a blast, wants to go to soft play after (has a meltdown that we can’t have dinner there every time) and swims at least twice a week on top of that. 

And her membership is only £30 a month! Bargain… just don’t ask what mine is….

Meltdown Mayhem

Our fae is normally quite well regulated and doesn’t need much input in terms of her emotional regulation. The past few weeks, however, have had me questioning everything I have ever done with her with regards to grounding exercises, distractions, and any other tool I have to help her through, and out, of meltdowns. We have been having at least one emotional crisis a day, if not more, and some of her meltdowns have lasted longer than half an hour. It’s exhausting her and us. 

I have no idea what is at the root of it. I have gone through the most obvious causes e.g. back to school after the Easter break; the garden is being remodelled.. but neither of these things seem to be causing her any undue distress. We were able to maintain important aspects of her routine even throughout her break. Her regular after-school play date was still implemented, and because she now receives a direct payment worker (see glossary if you don’t know what a direct payment is) she was able to keep in contact with some of her teachers from school, and this is important to her. 

Things that have in the last 24 hours caused significant meltdowns; 

She was not allowed to have her umbrella open in the car. Yes, I accept it was raining, but my point was we were in a moving car, the windscreen wipers were more efficient at maintaining visibility, and the roof far better at protecting her from water. Neither of these points seems to be satisfactory. 

She didn’t have her doll. The doll in question she had just thrown down the stairs at me. It was intercepted by her father and apparently he wasn’t supposed to touch it. He was, in fact, holding it about 3 inches from her nose, but this was too far for her to reach. 

She had to brush her teeth. Yes, all of them. 

I wouldn’t call the dentist at 8pm because she had a new tooth coming through.

She was prevented from greeting the landscapers who are building our new patio & outdoor space. I would hasten to add she was not prevented from greeting her “patio friends” by myself nor my husband, but simply because they were not there. They had gone to collect materials and were not due back until the afternoon. She was in full sit-down protest, in the rain (why must she always do this in the rain?!) demanding to be allowed to wait for their return, regardless of this making her extremely late for school. When it was pointed out that, if she didn’t attend school, she wouldn’t be allowed to attend any after school activity, she reluctantly relented. 

Amazon doesn’t stock working jetpacks… yeah I’m not sure where to go with this one. 

So, all in all, I’m kinda done with dealing with them. I’m at the point of walking away and just letting her get on with it, because she won’t tell me that the actual problem is and I have no idea how to solve half of these displacement outbursts anyway. 

In fact, the next time she starts screaming and throwing things, I think I might join her.

Sorry it’s been a while

So, unlike most of blog posts that are entirely, or mostly, about my darling little daughter, this one is all about me, me, me. 

I have recently started the process of unmasking my own neuro-spicy traits. This has been, to put it mildly, traumatic. Also has unveiled a few things that I until recently didn’t realise. On the top of the list is: I am, for reasons best left to my demented mind, unable to write anything in my own home. Seriously. I have tried the living room, dining room and my own bedroom. In previous homes, I have managed by having an office or office space but in our current home, despite being the biggest we have ever had, I do not have a space I can dedicate to writing. 

So, for the last two years or more, I have been writing all my posts in coffee shops and soft-play venues while my daughter was with childminders or otherwise engaged. About 6 months ago, she started to become resistant to the idea of going to her childminder, and as of three months ago, it became apparent that – regardless of whether she wanted to go or not – she simply didn’t have the spoons to. So, I lost the time to write, that’s not a problem but it meant that I never found a good substitute for that time. Until now. 

I have recently changed the gym I am a member of, and my new one has a wonderful members lounge that has wifi, coffee and tables. Also: an adult-only area where talking is frowned on, music is personal only and a log-burning fire is the only thing shown on the TV. It’s the closest thing to Arthur Conan Doyle’s “Diogenes club” that I have ever found. I am in heaven. So, normal service will be resuming, hopefully as soon as the Easter break is over. 

Next: As an adult, I have been debating going through the process of being formally assessed for autism. Having completed the same diagnostic tests that were performed on my daughter (scored from 0-30 with anything over 20 being ASD) and being told my numbers were between 25 and 27, and thinking that explained so much, it occurred to me that this is something I should address: there is a strong probability that masking for years contributed to, if not caused, the nervous breakdown that ended my teaching career. On sharing these concerns that I may be neurodivergent with my closest and oldest friends, their precise reaction was “Well butter my bum and call me a biscuit”. To which I responded “No.” to peals of laughter and the word ‘exactly’ being uttered, which I took to mean they were not shocked by the announcement. 

So, before considering reentering formal employment again, I thought I should see if some provision could prevent another one. So I contacted my GP, who informed me that waiting list for start the assessment – just to START it – was 10 years. 10 YEARS?! Apparently I’m not supposed to work. Seriously, how can it take that long? Then I was told if I wanted to go private it would be much quicker. Thank you, captain obvious. Here’s the thing: I don’t have £2,000 to spend on something I already know, and I resent having to spend that much money so that I can work: it seems counter-productive to me, when in fact I don’t actually need to right now. And in fact, I can’t go back to my original career, as there is no one who can look after my child full time. 

So, I have joined the long list of others I know on “not formally diagnosed but should be and is now struggling to get help” but I am truly grateful that things have moved forward enough that I managed to secure the support my daughter needed. 

Still, it takes at least 2 years for children to be assessed, which to me is also mad. 

So, take home points of the meandering post:

sorry it’s been so long

adult ASD assessment is a stupid long time

I like cafes. Just don’t talk to me.

Rules are rules for everyone

Rules are rules for everyone. 

Our fae recently put her grandmother in ‘timeout’ for ‘17’. 17 what I’m not too sure. I assumed 17 seconds. At least, that’s what I told her when I finished laughing. I have mentioned (I think) in the past how our daughter likes to care for everyone. She mimics how she has been cared for: if you’re upset, you will be cuddled. If you’re sick, you will have liquid paracetamol; and if you have a cut (no matter how small) you WILL have it doused in sudocrem.

So, it only makes sense that she expects that the rules that she abides by also apply to everyone else. I have lost count of the number of times that we have been told to calm down and count to ten when she feels that we need it. Normally whilst driving. This was brought to a head the other day when her grandparents visited. This is something that, I’m pleased to say, has become more regular. But just before they left, her grandmother had the audacity, the bare faced cheek, to leave the room to retrieve her shoes without getting permission from our daughter (who is very sure that she IS the queen thank you very much) and, as such, found herself summarily put in a time out. This did seem to stun her grandparents, and I will admit collapsing in laughter probably didn’t help the situation. She decided that grandma was in ‘prison for 17’ – not sure why prison, nor 17 what, so we assumed 17 seconds and prison turned out to be the comfy chair (I think she absorbed some of the Monty Python I watched whilst pregnant) so it was not a long delay. 

So, as of now, everyone is very clear they need to announce their departure from rooms or face the wrath of the rule-enforcing fae that lives with us. I would like to say this is the weirdest thing that has happened, but that would be a lie.