Flight of the butterfly part 2

So, I meant to write this update some time ago, but life happened and got in the way. Somehow, my daughter has got it in her head that being a human is a dull existence (she’s not entirely wrong) and is trying out being different species.

She tried being a lizard but was unimpressed that she couldn’t stick to the walls and climb to the ceiling. She tried being a spider, but no matter how much effort she put into it, she couldn’t spin a web (all that happened were some impressive farts that made the cat dart out of the house with its eyes watering). She has more success being a puppy, but I was becoming concerned that I was raising a baby furry, and told her to knock it off or I would take all her stuffed dogs out of her bedroom: we have just spent 5 years getting her to speak English; I’m not going to have her start barking instead.

Most recently she has gone back(!) to being a butterfly. Specifically a monarch blue butterfly. (She would, of course, be a royal butterfly.) She has demanded, and been provided with, a pair of blue wings. This is a piece of hair-thin nylon that has two straps of elastic to keep it on her shoulders and two more little loops of elastic to link them to the middle finger of each hand. She has been happily flapping around the house ever since. Occasionally, she has flung herself off the sideboard, flailing her arms and claiming she has achieved flight. She is reluctant to believe that she is (in the words of Toy story) ‘falling with style’.

She has also decided that, because she is a butterfly, my husband and I must also be butterflies. Thus, I now have a delightful set of light up wings that do my head in every time they ping off and smack me in the head, and in a moment of sheer Machiavellian genius she demanded that my husband get a pair of green toddler fairy wings. My husband is (as I think I have mentioned) 6’4 and built like Captain America, but when your 5 year old bats their eyes and asks you to wear the wings YOU WEAR THE WINGS (and then ask your wife to help you get them off after).

This was all very well, until she stood at the top of the stairs, contemplating the top floor balcony, and announced she was ‘going to fly downstairs’. I would like to say that our fae does have some sense of self preservation, and would not throw herself off a 20ft drop believing that flapping her arms would save her. I really would like to say that, but it would be a lie. She has NO sense of self preservation, and I’m not entirely convinced that she wouldn’t do this. So, at the moment, her wings are now only allowed downstairs, and she is very upset that I have literally clipped her wings. 

I can’t wait to find out what she’ll try to be next.

Wilful Ignorance

I recently found something that really got my goat. In fact after several days I am still wound up enough that my blood pressure is still in the red, and it is something I feel I will share so it can wind you up as well. Or not – maybe I’m on my own with this.

A child that my fae plays with at her childminder’s is starting to show behaviours that indicate that they should be assessed for neurodivergent spectrum conditions. He is a little over two; non-verbal; unable to follow simple commands like ‘put on your shoes’; can’t identify any body parts; and will not make eye contact. When this was flagged with the parents and health visitor, all were reluctant to pursue any diagnosis or investigation because he might be ‘mislabelled’. 

This makes me tear my hair out. I have spoken to numerous adults online, young and old, who have finally been diagnosed – some in their late teens, some in later life – with autism, or ADHD, or something like, and have told their parents only to be told ‘oh yeah, we knew, but wanted you to be normal, so didn’t tell you’. You WANTED your child to struggle!? To think they were stupid? That they were a freak? So you didn’t tell them??? 

Better yet ‘we didn’t want you to be drugged’. Where have I mentioned drugs? A diagnosis is not a prescription. My daughter is not prescribed anything. She has the support she needs and is lucky enough that she doesn’t have a chemical imbalance that requires chemical intervention. If more children had the proper support and access to that, less would need drugs (don’t get me wrong, for some there is an absolute need for medication but it would be drastically reduced if more support was offered). 

So, at the end of the day, I can only assume that some parents feel that there is a stigma to a neuro-spicy diagnosis. The answer, then, is simple: don’t tell anyone who doesn’t need to know. FYI your child does need to know, as do their teachers and any medical professionals / social workers in charge of their care. But friends and family do not. 

And so what if they are misdiagnosed? Oh no: your child will get some extra support, the horror. So, please spank your inner moppet or whatever and get over yourself, and make the appointments for assessment. 

Finally, an assessment might show that your child has some underlying issue that is solvable e.g. glue-ear or a simple wax build up so they can’t hear. They might be tongue-tied, which is why they  don’t talk. These things are physical, solvable and will drastically improve everyone’s quality of life. 

There is no excuse not to seek medical help for a child in the UK. It may take time but we still (at time of writing) have an NHS that will treat them for no cost. So do it!

I’ll get off my soapbox now.

Being Good

We have rules in our house. I’m sure everyone does. Importantly, they apply to us as well as our daughter. The most sacred of them is ‘if you say it, do it’. This goes for consequences, as well as rewards. We never promise anything that we are not sure we can deliver on. This means that she never calls our bluff on anything – which is a saving grace as it allows us to quell misbehavior with a simple ‘either/or’ choice. For example, “Either you sit properly in your car seat, or I will put this chocolate in the bin.” You’d be amazed how fast she can buckle up and sit right. 

Right now, our fae is going through a phase of seeing sleep as the enemy: one that must be fought on every front. She will weld her eyes open in bed; plead for just ‘one more’ story; and do everything she can to stay up late. I would say she’s suffering from FOMO.. but seriously, once she’s asleep, all we do is sit on the couch and scroll instagram whilst drinking tea. I’d love to have the energy to do anything else. 

To this end, my kid found a new way to stay up late by ‘being good’. She has recently discovered (via a show called “Yakka Dee’) soft boiled eggs. For anyone not yet familiar with this particular animated children’s entertainment: keep it that way, unless you are a fan of constant repetition or raising a functional mute. Each episode is just a few minutes long, and consists of repeating the same word over and over until you feel your eyelid twitching, and the urge to hurl something – possibly yourself – through the screen is almost unbearable. 

Eating the egg takes a while which means our evening routine is already running late, which we are okay with, as this is the first non-porridge food she has eaten since January. She then looked around with a calculating look and decided she wants an apple. Again, whilst this will take time, fruit is good for you and eating them is to be encouraged. So she gets a (peeled, sliced) apple. Halfway through it she wants a banana instead. I tell her she can’t have a banana because she hasn’t finished the apple. She proceeds to take 40 fricking minutes to eat the goddamn thing and THEN smugly demands the banana. By which time we’re so late for her bath that we should put her straight to bed, except breaking routine is as bad as breaking rules.

And I can’t say no, because she kept her side of the deal by eating the apple. This kid doesn’t eat fruit.  She has never been fond of fruit, but no, today, 40 mins on an apple and 30 on a banana because proving a point is a hill she will die on. This has my husband cracking up as he knows she’s doing it to see how long she can extend dinner by, I know it, and she knows it and there is absolutely NOTHING I can do about it. Because she is Being Good. 

Still, the day after, it was my turn to try and keep a straight face: when he asked her if she ‘wanted anything else to eat’ after eating her porridge.. and she wanted a dippy egg. Which he had to then cook and present to her. Because eggs are good for you!

(She also made us play one of the most bizarre games of “I spy” ever known whilst she ate the egg. It starts out different by saying the colour of the object instead of the letter. Fair enough, she can’t spell. But then it went meta – “I spy, with my little eye, something hiding.”

Not to be outdone, her dad went back with “Is it a big green monster with three eyes and purple toenails?!?” She gave him a strange look and said “No, daddy” which he seemed very relieved to hear.

By the end of the game, we had looked for “things you can’t see” and “things that are invisible” and “someone that isn’t eating the damned egg fast enough” and I think maybe we need to introduce some rules to this game)

She was late to bed that night too. 

Being good my arse.

Spotting the fae’s

This weekend, my daughter was invited to a birthday party. She was one of 4 known fae children, in a room containing 30+ youngsters: running around; bouncing on one of 4 bouncy castles; eating candy floss; and generally going manic. It was an interesting study: once you know what to look for, it is very easy to spot the neuro-spicy kids, even in the melee that was going on in there.

First, to set the scene: we were crammed into what I presume during the week is some sort of nursery, but looked like a large village hall. In it were the aforementioned bouncy castles; a small stall where people could get the candy floss; a long table set with kids party food; and the deafening sound of poorly performed Disney cover music. The music was loud enough to drown out the kids screaming and the noise of the generators for the inflatables, and made conversation practically impossible. Why is it necessary to have music at this volume? (Yes, I sound like a grumpy old lady. No, I don’t care).

Ten minutes after arriving, my daughter has climbed the side of a bouncy castle and is allowing the constant motion of the mini-mosh pit from below to rock her to sleep despite the noise. Her fae friend thinks this looks like an excellent perch, and tries to join her, but lacks the physical capability to climb so has to get a boost by climbing on nearby ‘normal’ kids who can’t see the appeal of climbing the sides of their inflatable fortress. Looking around, they are the only two on the side. A third fae child is (in my view, sensibly) wearing ear defenders, and runs past to devour the end of his second stick of candy floss (these were both the size of his head, and required perseverance to consume). 

Halfway through the session, I spot my child who has, at some point, ‘lost’ her socks. When interrogated, she reluctantly points to a safety mat where, with some effort, I extract her socks from underneath. She point blankly refuses to put them back on. I try to make her, but I’m still holding her sodding candy floss in one hand – she got an extra large one by looking cute at the stall holder. She doesn’t even LIKE candy floss. I manage to grab her round the waist and haul her like an uncooperative and angry set of flies over to my husband, whilst she dead weights on the floor flapping her legs in the air like a landed fish. The same best friend from the wall-climbing saga thinks this looks like a great dance move and flops down on the safety mats under the inflatable slide and mimics her. I always knew my girl was a leader. Many other neuro-typical children start edging away, somewhat confused. The fae with ear defenders steps over both of them to get more candy floss from his parents. 

15 minutes before the end of the session, the final fae child seizes his opportunity: whilst most children and parents are occupied playing musical statues, he decides to take a running jump and somersault down the largest inflatable slide. His parents watch in horror; he flunks the dismount; and lands like a sack of potatoes on the safety mat where his sister was doing the ‘landed fish’ dance earlier. This distracts the staff member running the musical statues game long enough for my daughter to help herself to the prize sweets despite never managing to be a ‘statue’ in her life. 

Finally, they are called to sing happy birthday to the birthday girl – of landed fish fame. She is nowhere to be found, until both she and my daughter reappear from an out of bounds area where the slushy machine was located. I pretended not to notice. 

During the party tea, my daughter would not eat anything, so I provided her with emergency snacks (trust me all parents of fae carry emergency snacks); the birthday girl only ate the sausage rolls; her brother only ate the cup cakes – of which he had three; and ear defenders had all the bags of vegan cheesy puffs my daughter could steal for him. Every other child ate what was put in front of them. None of them would drink the juice, and all of them left early to go bounce again. 

Throughout the party all the other parents sat around, chatted and looked relaxed. I hope they could feel the hate emanating from our haggard corner where no one ate, barely sat down and ended up sticky and covered in half eaten candy floss. 

Also, if you find my daughter’s socks: keep ‘em, they’ve probably evolved by now.

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