Decisions and delegating

In our house, if there is a difficult decision to be made, such as where to hang a picture or what colour to order an item in, that decision is made by our fae. Seriously: I am hopeless and can vacillate for hours (or, in some cases, years) of making a choice (I still haven’t worked out what I want to do with my life). My husband is sometimes better than me at it.. but not always. Our daughter, however, has, at the age of 5, more sense of direction and purpose than I have ever felt. She seems to know exactly what she wants, and how to get it. She will happily lead a group of adults on a walk, regardless of whether or not she has ever been on the trail before. So, it seems to make sense that all decision making is delegated to her.

On the other hand, she is herself exceptional at delegation, frequently getting others to do things for her. Our house is covered in Hama/fuse bead models (if you don’t know what these are, I envy you, but see picture below). These are made by tediously and monotonously placing small pieces of plastic onto a board as per the design. Then (in the case of hama beads) you iron them so they melt and form a cohesive picture; or (in the case of fuse beads) spray liberally with water until the PVA hydrates and glues them to each other, also forming the picture. I bought them for her, as improving her fine motor skills and hand-eye coordination was something that was indicated on her school report as a target.

I maked this (under orders)

Our house is full of these things now. I have had to buy repeated refills of both sets of beads. To my knowledge, she has yet to make one. She will choose a design and then (somehow) convince a nearby adult to lay it out for her while she supervises and occasionally mixes the bead colours up. Then, she will happily do the spraying down, or trail like a duckling as you iron the sodding thing. I am now an expert in making both type of designs….. 

She has only a passing association with language, but her “sad puppy” face is second to none. My husband has suggested she is placing them on every door handle she can find in an effort to prevent me from walking into them. I would take offense, except it seems to be working. 

The same thing happened last Christmas, where she managed to even rope the cleaners into making paper chain decorations with/for her. I truly believe that when it came to delegation she got someone else to write the book.

The Blue House

Since the death of my father, my fae has been searching, in vain, for a blue house. It has taken some extensive and gentle probing to ascertain the particulars of this house. It turns out this house is very big, and situated ‘over there’ (this statement is made with a vague hand gesture in a random direction). In it are her brother and sister (she’s an only child), both sets of grandparents (one grandfather is now deceased), her child minder, her friends, her unicorn, a baby shark and the entire Paw Patrol.

Safe to say, this house doesn’t exist. Or, at least, not in the form she describes. I have heard that children can have imaginary friends, but, of course, my child has to over achieve, and have a whole imaginary mansion complete with inhabitants and staff. This would not be such a problem, if she did not insist on looking for the bloody thing. She has, on more than one occasion, dragged my husband or myself off around the neighbourhood to look for this house. She has even then announced that one or other of the neighbours’ houses is her ‘blue house’. Trying to explain to people why this small creature is trying to demand entry to their abode is going to be problematic one of these days.

I believe that this has been her way of dealing with the grief of losing a relative, and is her way of processing it on top of being away from school for the six weeks of summer, and not having her friends or normal routine around. 

In an effort to nip this in the bud, we have purchased for her a blue doll’s house. Our hope is that we can populate it with effigies of all the things she believes should be there, and this will be an acceptable stand-in for the “real” blue house she keeps looking for. 

I will let you know.

We have normality

After 6 long weeks normality (such as it is) has been restored, so “Anything you still can’t cope with is therefore your own problem.” Sadly, this is a long list of problems. Some of it is fall-out from the 6 weeks, and some is ongoing issues. 

As I have mentioned in past posts: some traits of my daughter’s particular brand of neuro-spicy are very well masked. There are times that she takes me by surprise with the literal way she will interpret things. As her communication progresses, it becomes clearer it has become obvious that metaphors go over her head – much to the amusement of my husband, as I tend to be the one caught out be this: for example, when I commented that she had ‘done a number’ on her head (having fallen into the table after claiming that the floor was lava) she in all innocence wanted to know ‘what number?’

She is also a big believer in “trust but verify”. The picture below is of her verifying that, when I told her that no good would come from trying to use a partially deflated space hopper on grass whilst wearing roller skates, I was indeed telling the truth (it turns out I was). I put this down to the  scientific genes she has inherited. For any other budding scientists out there, inflate the space hopper, and use roller skates at a different time on a more solid medium than grass. Also, wear safety equipment. 

So,

After 6 long weeks normality (such as it is) has been restored, so “Anything you still can’t cope with is therefore your own problem.” Sadly, this is a long list of problems. Some of it is fall-out from the 6 weeks, and some is ongoing issues.

As I have mentioned in past posts: some traits of my daughter’s particular brand of neuro-spicy are very well masked. There are times that she takes me by surprise with the literal way she will interpret things. As her communication progresses, it becomes clearer it has become obvious that metaphors go over her head – much to the amusement of my husband, as I tend to be the one caught out be this: for example, when I commented that she had ‘done a number’ on her head (having fallen into the table after claiming that the floor was lava) she in all innocence wanted to know ‘what number?’. When I complained that she hadn’t touched the hot chocolate that she made me buy her she stuck her finger in it and declared that she had now touched it.

She is also a big believer in “trust but verify”. The picture below is of her verifying that, when I told her that no good would come from trying to use a partially deflated space hopper on grass whilst wearing roller skates, I was indeed telling the truth (it turns out I was). I put this down to the scientific genes she has inherited. For any other budding scientists out there, inflate the space hopper, and use roller skates at a different time on a more solid medium than grass. Also, wear safety equipment.

So, all in all, everything is back to normal. My daughter trotted off into school without a backward glance (bye then?) and has been much happier since it started again, and I hope that everyone else is too.

Now, if she would just sleep through the night instead of insisting that 1am is a good time to get ready to go to school, we would all be much happier. Until then, there’s coffee.

all in all, everything is back to normal. My daughter trotted off into school without a backward glance (bye then?) and has been much happier since it started again, and I hope that everyone else is too.

Now, if she would just sleep through the night instead of insisting that 1am is a good time to get ready to go to school, we would all be much happier. Until then, there’s coffee.

The difference between fine and masking

“But she seems completely fine. “

This sentence, regularly uttered by friends and even family who have neuro-typical children, makes me want to tear my hair out. To put this in context, our nearest relative is over 100 miles away; nearest friends over 200. They have not been in extensive contact with my daughter. The longest has been a few hours here and there, and never overnight. 

Last month, my father died. It was not out of the blue, but much sooner than we were told to expect. It is also the reason for my month of radio silence. This has blown any semblance of routine or normality to hell. For the most part our fae has managed like a trouper, doing everything she could to cope with and even enjoy the change.

However, doing so completely used up all her spoons: she is no longer sleeping as well as she was; she has pushed every boundary and every button we have. I know, and have been told dismissively, that “all children do this” but there is a distinct difference between a meltdown and a tantrum. My normally balanced and well-mannered fae child is melting down multiple times a day. I haven’t yet braved the back to school shop (she goes back Wednesday) nor given a thought to checking what parts of her uniform still fits (I’m assuming none of it). 

Two weeks ago was my father’s funeral. It was on a Thursday. Because we had already planned our summer out, my husband’s leave was all spent. So, after some thought, the only way we could make it work was to go down on a Sunday and return on a Saturday: this way he could spend the week working, remotely, from my mother’s house; and our fae wouldn’t be faced with three days of uproar as we drove down; attended a funeral; then drove straight back again. We chose to stay in a ‘luxury’ hotel to try and minimise problems.

This was our first mistake.

The hotel, despite being 4*, was having boiler issues (for 3 days) so the room was over heated but there was no hot water – a problem for a child who expects a bath every night before bed. Having asked about it, and pointed out that our daughter was not sleeping – both because of this insanity, and having been put on a pull-out sofa rather than a bed (despite us paying for the bed!) – they conceded to moving our room. Which helped with the heat if not the water.

If people ever ask again if routine is really that important to our fae, we can just point out that she preferred to have her evening bath in cold water, rather than breaking routine enough to go without.

During the days, I was often able to meet up with my brother and his family. She loves her cousin, and they went swimming, and to an outdoor play centre together, and had a great time. Despite being only 5, she walked 5 miles without complaint with only a bag of crisps to eat – as none of the other food was something she could/would eat – and never once lost her smile. All this with no sleep and no warm bath. She held it together throughout the funeral, and never made a sound: she was good as gold (none of this seemed strange to anyone?). She held it all together right up until we were home alone.

And then for the next week she screamed, cried at nothing, and for the first time tried to pinch me. She asked to be taken to places and then complained that we took her to them. She began demanding we take her to “her blue house” and even struck out in search of it on her own. To clarify: Her “blue house” is where, amongst others, our only child insists her brother and sister live – along with her unicorn. Her sudden insistence that she can walk to an imaginary place has given us more cause for concern than we’d really like right now.

She has never before thrown herself on the floor screaming in a supermarket, but she has now. She masked for the entire week and spent every last ounce of her control coping in a strange environment. The moment we were back in her safe space, she broke down.

As cruel as it may sound, we haven’t budged on our boundaries with her. Her bedtime hasn’t moved; she still has her dinner, bath, books and bed. She still isn’t allowed to eat crisps for breakfast, and no matter how hard she pushes, she is not allowed to run away in shops. This is not to be draconian: it’s for her benefit. She is pushing to make sure the boundaries are where she thinks they are. If they have moved, she’ll feel like we’ve cut her adrift just when she needed us most. So, while I really don’t feel like it, and both my husband and myself are beyond exhausted, stressed and (in my case) popping anti-depressants like they’re candy: we are still holding the wall. It needs to happen. 

I managed to arrange meetups for her with both her childminder and, most importantly, her other neuro-spicy friends. She is finally relaxing back into her home life, and being assured that everything is where it’s supposed to be. It’s taken a week. 

Two days ago she told me she wanted to go on holiday again. I almost broke down in hysterics.

The Flight of the butterfly

So despite our best efforts to distract and divert, our daughter has sadly not forgotten about the blue wings. So, with no small sense of trepidation, I logged on to that great warehouse in the sky and searched the South American river. It was with great relief that an acceptable set was found: A set of floppy, nylon butterfly wings complete with antenna headband. Unfortunately, she also spotted a rigid pair of light up wings that were to fit an adult. Lucky me. 

Sure enough, within 24 hours both sets had dutifully shown up in an oversize brown box and a hopeful little face excitedly donned the wings and headband, then promptly threw herself off the nearest bookcase proclaiming she could fly. No amount of evidence will convince her she can’t, and she has taken to throwing herself off high objects again.

Luckily the flashing lights on the wings she insisted I wear seem to distract her and, when outside, she feels the need to stop and attempt to drink nectar from every flower. This act is impeded by the lack of a proboscis, but it’s safer than the flying attempts, so for the moment I’m not going to dissuade her. 

When her father finished work and found her (happily) and me (grumpily) wearing wings, he was promptly interrogated as to where his wings were. Her brain screeching to a halt was visible when she was told he didn’t have any. She looked from mine to hers, and then back to him, and looked very confused. Then back to me, with big puppy eyes, before asking her father what colour wings he would like? 

So guess who has a nice set of green wings now?

Rolling with imagination

My fae has an imagination that is, at some points, a strange and scary place. I have heard it said that children with autism lack this singular human quality, and I have to say that in our experience, that is total hogwash. Not only does she demonstrate imaginative play, she will insist that we play in whatever world she has created with her. This has the singular disadvantage that while she can see and hear what is going on, we have no idea!

I have often watched in complete bewilderment as toys are moved from the top of her pup tower (see the numerous references to Paw Patrol) to book cases, to the floor and back again. This is accompanied by a continued narrative that makes no sense in her own language apart from the occasional outburst of “No Mummy!” when I get things wrong. 

I spend hours moving various toys around having no idea what I’m doing and hoping that I’m playing the game correctly, I guess I must be because she keeps making me play it. On one memorable occasion, she tried to make the cat play. The cat being infinitely more sensible than I gave her a look of absolute contempt and sauntered out of the play room with her tail held high in the air. 

My husband has it worse, though he did bring it on himself. While I have to shift toys around, he has to continuously lift our daughter in the air while she thrusts one little fist forward proclaiming that she is Superman and that she is needed to rescue a duck in a tree, or a unicorn. This has brought many questions to our minds. Why was a duck in the tree? Why doesn’t it just fly down if it doesn’t want to be in the tree? What’s the problem with the unicorn?? 

The answer to all these questions seems to be “SUPERMAN TO THE RESCUE!!!!!” to be repeated at progressively louder volume until she is ‘flown’ to wherever she has deemed said duck or unicorn is.

Last night, before she would eat dinner (porridge again) I had to spend some time calming her down from a total meltdown caused by her lack of wings. Blue wings. Apparently she has decided that the only impediment to her ability to achieve self-propelled flight is my failure to procure for her a pair of blue wings. I am an asshole. 

Anyone know where you can get blue wings to fit a tall, skinny five year old? Ones that will work

Happy Birthday Tiny Marshall

Our fae has a companion. Not a real one, but a stuffed toy which I may have alluded to a time or two in the past. This is a small, plush Dalmatian that goes by the moniker “Tiny Marshall”. This is a Paw Patrol reference (she has been obsessed for the best part of 4 years and it shows no sign of waning). Tiny Marshall is very important to her and, as a consequence, to us as her parents. He is mentioned in her EHCP (it was a point of amusement with her teachers that it was mentioned that we have 5 identical Tiny Marshall’s: 3 in active rotation with similar level of wear and two kept in reserve for when/if the others wear out – he really is that important). 

So, when she woke up one morning and insisted that he had to have breakfast, we shrugged, dumped some stale cereal in a plastic dish, and put it on the table next to her porridge. I guess he’s a slow eater, as he’s had the same cereal for the past few months.

Recently, she announced it was Tiny Marshall’s birthday. This became a point of contention until she was exceptionally well behaved at school and I, for reasons best forgotten, needed to stall going home.

So, we went and got Tiny Marshall a birthday cake. I drew the line at party hats, and had a full on fight over refusing to buy him a present (seriously I’m not buying a toy, a toy; the recursive insanity was too much for me). When we got home, the dreaded and obligatory song was sung, candle lit and dutifully blown out, and cake was eaten. The cake being, I’m sure, the sole purpose for this charade – she really likes cake. 

Two days later, she held up another plush toy and announced it was Baby Shark’s birthday….

Tiny Marshall has a hard life and deserves a birthday

Direct Payment

Surviving half term was a touch-and-go event. At some points, I wasn’t sure that either myself nor my daughter was going to make it. It was a relief to drop her off at school on Monday morning, and send her off with a wave as she happily disappeared through the door. 

I slept. For two days, she was at school and I slept. On the third day, I still wanted to stay in bed, but just about managed to drag myself out for a walk with my husband. It was with some relief that I got a call from the Disabilities social worker telling us that, even though it was not as much as she promised, nor what she promised, we have got 8 hours a week of direct payment during the holidays.

Direct payment… what the f**k is direct payment?!

If the above statement is going around in your head in some form or other, rest assured, you are not alone. I had no idea either. It turns out, what it does is to allow you to employ someone to act as a personal assistant of sorts for your child – to take them out/babysit for a number of hours a week. 

In the cases of disabled teens, including fae, this allows them to go out with friends without supervision. Well, not without supervision, but without their parents helicoptering around them. Instead they can have a teacher, LSA, or other professional they know. Which is much better, I’m sure, and doesn’t put any crimp in their social life. 

In the case of our 5 year old, it means she will get to spend time with one of her favourite adults from school during the breaks, and hopefully I won’t go insane. 

To get this underway, you have two choices in our council: option A, you can undertake the sole responsibility for being an employer: sort the HMRC; PAYE; DBS; and the rest of the paperwork required for an adult to work with a young person – all by yourself – and submit it to the disabilities team for approval. Or, option B: you can have them put you in touch with a non-profit charity which gets you and the prospective adult in question to fill in a few forms, and then they do all the liaising for you. The advantage of option B is that all you need to submit on a rolling basis are timesheets to show when your child was with their ‘personal assistant’ – as they are called (seriously, she’s 5 and she has a personal assistant. I’m 8 times her age, have far more to do, and significantly less sense of order. I want a personal assistant!)  

The advantages of option A is ….. umm anyone? Yeah, I got nothing. If anyone does please comment below. 

So, I have a small tree’s worth of forms to fill in, but I’m hoping to get that done in the next two weeks, and have this actioned in time for the summer break (ambitious, I know, but I can live in hope). If not I will be googling ‘How to keep your child occupied during summer’ every day for the coming 6 weeks. 

If only I had a personal assistant to do the paperwork…

Just being

So, my daughter is coming to the end of her first year of school. In that time, I have been trying to recover from 4 years (two of which include the COVID lockdown) of being basically the only one looking after her full time. My husband and I had no family nearby, and he had to work, so support was not necessarily available. This year, I have had some time to myself for the first time in a long time. Before I had my daughter, I was recovering from a nervous breakdown from looking after other people’s children, so I have spent this year just trying to keep on top of household chores (that’s a lie we have a cleaner, my daughter only eats porridge and my husband won’t eat anything I cook because I use vegetables), laundry and just being. 

And therapy, lots of therapy but that’s another story. I am beginning to feel like I might be able to be a productive member of society again. So this is the question: What does a former teacher (with NO intention of going back), with a 5 year career break, no social skills (or brain-to-mouth filter) *do* to get back into gainful employment?!

I have some marketable skills, but mostly I write and look after a fae creature with a death wish. So far, she’s still alive, so go me! I’m thinking of retraining, but who knows. I only have maybe an hour a day to do anything, so wish me luck. 

For the moment, though, I will continue to exist and hope to survive the summer holidays.

Not the daddy

So, the forms and signs of how our daughter’s fae tendencies express themselves continue to evolve. This one did take us by surprise, although in hindsight it probably shouldn’t have.

My husband, on a day-to-day basis, only wears white T-shirts. I know that you are not asking for fashion tips, nor would you take them should you ever see either of us in the street – but it is relevant. It is not really by choice, but rather, a necessity that this particular item of apparel exists in abundance in his wardrobe. He is rather tall and broad, and as such struggles to find clothes that fit. These t-shirts fit, but come from Costco, and hence they came in bulk.

So now my daughter is very used to seeing her daddy wearing white T-shirts. To the point that, on Sunday when he came to join us wearing a blue dressing gown, she had a full-on meltdown and refused to accept that he was her daddy. She was so adamant that her daddy wears white t-shirts that she would not look at or talk to him and fought fiercely when he tried to give her a cuddle.

She would not stop until he went and changed. He came back wearing the right t-shirt and a bemused expression, and was welcomed with a big smile and relieved hug from a fae child who had believed that her father had been (briefly) replaced by a blue-dressing-gown-wearing imposter. 

I feel this is an interesting probably as mummy is still mummy regardless of what she wears and whether her hair is brown, blue, or looking like a Smurf vomited skittles on her. 

Who understands the inner workings of the fae mind.