Signs of tiredness

As with all children (I imagine), our fae won’t always recognise that she is tired. She will sometimes accept that she is tired – she is always tired;  she won’t sodding sleep, so it’s always a good bet that she has a sleep debt – but you will always know. 

She has two moods when she is tired. When she is at a point that sleep will come easy and putting her to bed is as simple as pointing out there is a shelf she can place her body on, she will turn into a flaming ball or rage. Seriously, nothing you can do will be right when she is in this mood. Some salient examples:

Two nights ago she was chatting about what to do in the morning. She told me she wanted to go to a specific garden centre called ‘Cherry Hill’. I agreed that this was indeed doable, and we would head there. Ten minutes later she asked what we were doing the next day. I said we were going to Cherry Hill. She threw herself onto the bench kicking and screaming and that she didn’t want to do that, she wanted to walk up a mountain. When I pointed out she said she wanted to go to the garden centre, she paused mid-flail and said “Oh yeah”, giggled once, and went back to her food. I’m not sure what else I was supposed to say at this point, but I’m very sure I was NOT walking up the mountain. 

Last night she looked out the patio doors and started crying, when I asked what was wrong she explained through hiccuping sniffles that there were no daisies in the lawn… Well, no, there aren’t. There never has been. We have dandelions and clover in abundance but strangely no daisies.

She got up, marched outside and screamed at the lawn that it was growing the wrong flowers, that it needed to grow daisies and demanded that I immediately made daisy seeds materialize in front of her. When I failed to do this she went back to crying and wailing. 

And then there’s her other mood. Her second mood is more dangerous: when she is beyond this point, she will become manic. This means you will need at least two hours to get her to sleep (which is more like passing out through exhaustion) and will take you through a foray of bizarre scenarios that you never thought were possible. 

I touched on one of these in ‘Notes to my daughter’ but allow me to introduce you to Daniel. 

Daniel is a rock. He is a very special rock. You see, Daniel was the last in a series of overheated rocks that she found on a walk we went on one evening. Most of these rocks were cured by “cooling” them in the river she promptly dropped them in, but Daniel was more seriously ill. He was diagnosed with a blood illness where ‘his white blood cells have become attackers not protectors’. Basically she decided her rock had leukemia.

Yes, we can point out that this is not possible because 1. It doesn’t have red blood cells, or 2. White blood cells and 3. It’s a rock. But none of this deterred her from bringing Daniel home, placing him in isolation in a water bottle, feeding him ‘medicine’ (sea salt) and then declaring him better a few days later before releasing him back to his friends with a purple “one” drawn on him (some sort of capture, mark, release tracking programme?). Don’t ask me, I just had to help nurse a sick rock. 

I have also had to help bathe her in this condition where I was informed that the bath was a pond, ok… and that she was wearing SCUBA equipment, following so far… and that she is fleeing from a “running pretend shark” (at least it wasn’t real….that went in the sea… and then she needed to get out because she was pond sick)

So there is nothing wrong with her imagination. And she may not always tell you that she’s tired but believe me you will know.  

Overcoming Adversity

My fae has shown great tenacity in the face of setbacks this year. Some are big, some were small, some just plain stupid and pretty much all of her own making. 

The weather: this summer, I think we can all agree, failed to summer! It has been, at best, pathetic. This has not stopped my daughter insisting on playing outside everyday. It doesn’t matter if it’s March and the thermometer hasn’t made it off zero, or it’s August and it’s breaching 30. She WILL go outside. Recently she has learnt (much to my dismay) how to operate our very stiff patio door and so can let herself into the garden. So I now struggle to keep her in the house regardless. So despite me pointing out it had just finished chucking it down, she announced she was going to ride her bike. The bike was wet, so she found a towel (fortunately the one I use for the cat) and dried it. She then found it cold (it was about 10 degrees out) so she came back in and got a hoodie. When she complained of wet feet and it was pointed out she was barefoot, she returned once more and retrieved her shoes. I pointed out this time – when she complained that her shoes were uncomfy – that she might try socks as well and she stomped off to get some. By some miracle, she managed for the first and only time in living memory to put her own socks and shoes on. She also returned in a hat, scarf and gloves. When I suggested a jacket may be more appropriate, I was treated to a scornful look and was told in no uncertain terms that she ‘WAS GOING TO RIDE HER BIKE’ 

This performance took the best of fifteen minutes, she rode her bike for five minutes, and spent 20 minutes dekitting and huffing that I made her put everything away. The important thing was that she got to ride her bike. 

Having a broken arm would have slowed most children down (I think) but my daughter took 5 minutes to dismantle the splint and learnt that the extra rigidity provided the splint was an excellent way of practicing handstands. 

She also didn’t want to give up swimming and was quite content to take the splint off to continue going in the pool. So much for keeping it on at all times. We managed a week and that was a struggle. Three weeks was the total she wore it at all before she ‘lost it’.

So I don’t know if this counts as resourceful, determined or demented but so far nothing has got in her way.

Don’t assume anything

Trying to figure out what the hell to do with my daughter over the summer holiday has had me tearing my hair out. There are things that I dismissed out of hand as being inappropriate because of the duration (7 hour football training), the noise (ten pin bowling), or her capability (she can’t swim). 

This seemed like a reasonable thing to do, as by the end of term she found even an hour of cheerleading too much, and a morning in the park with her friends made her fragile for the rest of the day – fragile like a bomb, not like a flower. One wrong move and she turned into a tantruming, screaming demon. 

We still go to the pool several times a week, but the one we use doesn’t blast music and doesn’t have inflatables or flumes in it. Constant exposure to water with nothing to do but swim has improved her confidence in water, to the point that she is now insisting we need to visit water slides. Wonderful. I have no idea where any are, so I will be spending most the day contacting friends who have grown up in the area I now live, and googling. The aforementioned pool is, unsurprisingly, in a gym complex. Walking out, she saw the ads for the kids club including the football training. Announcing she wants to do that, I clarify that she A. Knows what football is, and B. Understands that this is from 9 am to 4pm…. Well ok. 

So, for the first session I spend the entire time chilling out in the gym pool, spa, workout floor and finally the lounge/cafe/ Diogenes club. I will be honest I spent at least 5 hours in the cafe – expecting to get an announcement to collect her at any moment. When 4pm rolled around I went to collect her, only to be told that she’s had a wonderful time, was only over stimulated once and was an angel the whole time. I walk over to her and she greets me with ‘Hi mama, can we go to the pool?’ So, not really tired out. She’s there again today, and I’m enjoying breakfast in the cafe. It’s a hard life. 

Her Direct Payment worker had her yesterday, and took her bowling. I had put her ear defenders in her bag, but apparently she loved it. I picked her up and she was bubbling about everything. I’m not too sure how long this will continue, and I’m sure at some point she will be over reached, but what I have learnt is that just because it doesn’t make sense to us, doesn’t mean it won’t make sense to them. 

So we’re off to the water flumes tomorrow. Where’d I leave my ear plugs?

Well that escalated quickly part 2

So it’s the end of term today time for an update I guess. So in response to my email to the governors and subsequent meeting lead to a full scale governors investigation. The result of which I got by letter a few weeks later. Of my 7 complaints of neglect and poor communication every one was upheld and found to be true. Every. Single. One. 

The chair of governors must have had some sleepless nights over this and frankly I’m surprised that the head is still in post. The apology I received seemed sincere if, not of consequence but what was is that they have reinstated the communication diary. They are also going to make information more readily available and they are looking at their policies regarding the reporting of injuries. Well for my daughter at least. I think I have become that parent. I didn’t want too and am frustrated that they are not seeing the big picture, I am not fighting for just my child but all the children in the school and it is frustrating that all they seem to want to do is stick their finger in the damn rather than fix the hole.

problems for September I guess. The head was supposed to follow up with me but didn’t so that will be another conversation with governors at a later date but right now 6 weeks away. Time to regroup and deal with the stresses of no formal routine, no regular clubs and no idea what to do. May the wings of fortune be ever in our favor and just remember we will survive this. 

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.