So, right now, I’m not sure when I last updated. For the last two weeks, we have been rather stressed. Actually, that’s not quite true: we have been rather stressed since the birth of our daughter, and that has been ratcheted up to 11 since the Christmas break.

For the past two weeks in particular though, wow: I haven’t felt this worked up in years. It was our daughter’s birthday. She turned 5. We wanted to celebrate so we booked her a party room at a local soft play centre.

The first blow came in the form of a present for her from my parents and brother, whom I can only assume I have unknowingly offended. I can think of no other reason why they would club together and buy my non-verbal, autistic, sensory seeking child a guitar.

I mean really?

really?! 

In terms of appropriate presents, this is up there with glitter bombs and drum kits. I have no idea what thought process was going on here, other than maybe that because my brother is highly proficient at playing guitar and my daughter likes listening to it she may like one. She also likes watching ‘clickspring’ on YouTube, particularly the series when he makes a skeleton clock from sheet metal – but I’m not going to advocate buying her a lathe and etching machines. 

For the past several days, she has been intermittently dragging the sodding guitar out, smacking the strings in a tuneless din, then crashing it into the nearest piece of furniture. She will then burst into tears when told to be careful.

They also got her a book on how to learn how to play… she can’t speak and they are under the impression she can read…. Words fail me. 

Still, all that aside, we plough on and send out invites to all her friends with an RSVP. Sidenote: people, RSVP stands for Répondez S’il Vous Plaît: this means please respond with “yes” OR “no”, NOT just tell me if you’re coming! It’s very frustrating trying to work out if non-responses mean no-shows.

Anyhow, I guessed at numbers (the number of responses plus one extra on assumption); ordered cupcakes on a whim from a baker who lives two streets away – that worked surprisingly well – and fret about the oncoming onslaught.

Things eased a bit with the arrival of her other grandparents, who instead of large noisy presents brought a highly-extravagant home-made chocolate birthday cake. And then the big day arrived, and I can’t recommend this way of holding kids parties enough: you take them to a large, enclosed environment where for 90 mins they run themselves ragged whilst adults chill out and drink coffee; then they are called into a side room where they sing happy birthday and are fed before being politely – but forcefully – told to leave at the end.

So you leave all the mess behind and swan off. Marvelous! I have no idea what I was worried about. In a few days, hopefully the last of the stress will unwind and I will be able to sleep again. At that point I may contact my relatives and enquire about the guitar: you never know, I may have lost the urge to insert it in someone by then.

In a weird twist on the standard I have noticed that, since my fae started schoo,l I have started to dread weekends. I am wondering if I am the only fae parent out there who finds this? 

My daughter loves her school; she loves being challenged both mentally and physically; and her school caters to her needs wonderfully. This unfortunately means that come the weekend she gets very disappointed that she is not going. Then we have to brave all five stages of grief over the 48 hour period before Monday rolls around again. 

1. Denial – she will point blank refuse to admit she is not going to school. This takes the form of moving the day marker on the calender to ‘Monday’ repeatedly and pointing at it; putting her school uniform on; and all out refusing to hear anything that doesn’t fit with her model of the world. 
2. Anger – this stage lasts the longest and is normally the most draining. She will scream, rage and throw things. She will also refuse to do anything you ask. Everything is ‘yucky’ and I mean everything: her hair; clothes; food; her favorite TV shows or toys… all is ‘yucky’. She will just scream and throw herself on the floor. The only winning strategy is to walk away. Have you ever walked away from your own child when they are obviously in distress? Can you tell me how you managed it because I can’t do it. 
3. Bargaining – offers of hugs, sweets, anything will be made to coerce you to take her where she wants to go. She will repeatedly ask to see if she has been successful. It’s heartbreaking and there is nothing you can do to make this better.
4. Depression – cuddles any one? Shame this is accompanied by a complete lack of appetite and disrupted sleep..
5. Acceptance – at this point we may be able to successfully undertake a family outing that is actually enjoyable. Possibly. Sometimes it works, sometimes it falls flat on its face.

So by the time Sunday night comes round we are all looking forward to a break that comes with Monday.

And to think there was a time I used to look forward to the weekend..

I’m not a Grinch: I don’t hate Christmas – normally. This year, however, it made me want to cry. Our fae thrives on routine and has settled into her new school so well that you’d think she’d been there years rather than weeks. Another six months and she’ll probably be running it.

The downside of this is that, when everything stopped for the winter break, all her carefully crafted and maintained schedules just.. stopped. As far as I can tell (because let’s face it, she can’t tell me even if she wanted to) this sudden and (from her perspective) unexpected cessation of normal services left her feeling utterly adrift. Indeed, even the weeklong planner we use to map out her week in advance just.. stopped working: All the usual markers for her school, childminder etc. just suddenly went away for the holiday.

Being 4 years old and neurotic-divergent, she dealt with this the only way she could – with repeated defiance, meltdowns, and disrupted sleep. It was hell. She loved her presents, and played with them all religiously, but they couldn’t make up for the disruption – after all, they were part of it! She also spent the first week on an apparent hunger strike: even on Christmas Day itself, she ate a grand total of a few mouthfuls of porridge and half a slice of toast.

So all the hours I spent making cookies, the roast dinner, and chocolate cake all felt a bit of a waste of time, seeing as she didn’t eat it and her father doesn’t really enjoy it. The looming return of our routine and, frankly, our lives – which felt for the entire holiday season like they were on hold, leaving us in some sort of purgatory – was met with a relief I haven’t felt since Lockdown lifted.

And it was a relief for her, too – she was so overjoyed to be taken back to school she had to jump up and down for a while before she could calm down enough to go in; and she’s not only resumed eating, but has been eating multiple large, nutritious meals every day! Such a contrast!

With her recent return to school, I had time to reflect on the past year and roll my eyes at the optimistic resolutions I made in the previous years (sadly they have always been the same, and never achieved). So, I have thought hard and decided this year I will break with the tradition of wishing to be thinner and healthier. Nor will I take up drinking heavily just so I can give it up next year – no matter how tempting it may be. 

So it is with great trepidation that I will share with you some of my new year’s resolutions; 

1. I am not going to have anxiety attacks over what my fae is eating so long as she IS eating. 
2. I will spend some time on things that I want to do. 
3. I will make the fae father do the same. 
4. I will stop holding myself to an impossible standard. 
5. I will find some way of achieving 1-4… no, I will, stop laughing. 

For the past month or so the school that my daughter attends have been attempting to toilet train her. This is something we have tried – and failed – to do on a number of occasions in the past. The problem is that all guidance starts with “explain to your child”… so as our fae is non-verbal and ascertaining understanding was virtually impossible, toileting also became impossible. I asked many professionals how to approach this and they shrugged. I escalated asking how (because frankly after 4 years of nappies I am more than ready for her to be done with them) until we were referred to the wonderfully, if slightly erroneously, named child continence clinic. The frustration we had with this is that our daughter is not, by the definition, incontinent. She has the muscle control and the ability to be toilet trained; she just doesn’t know that she’s supposed to be. The first nurse who talked to us merely explained in an overly loud and painfully long winded fashion that, until she talked, she couldn’t be out of nappies. I don’t agree with this. 

The second clinic sent me a survey to fill in, where they expected me to be able to ascertain on an hourly basis if her nappy was used, and estimate using the Bristol scale any matter in it (if you don’t know what the Bristol scale is, you’re very lucky and don’t google it).

The frustration of being told once again that no, she can’t be trained, but here’s a 6 months supply of nappies (providing you only use 4 in 24 hours) and they will talk to the school later.. My heart fell, this link between verbal communication and toileting was taking a toll on us. 

We taught our daughter to use a fork and spoon, to count, to colour, to buckle and unbuckle a seatbelt and operate an iPad through “monkey see, monkey do”. I couldn’t see why this would be any different (spoilers: it is).

We tried encouragement; we tried giving her books with pictures; and tried sitting her on the toilet. Nothing worked. So, it was with trepidation that I agreed to allow the school to try at the beginning of the week. It was not an auspicious start. The first day she returned home with several bags of wet clothes.

We are now several weeks in, and she is either not evacuating at all, or still bringing home bags of washing. When I had the audacity to suggest that maybe she wasn’t ready, I was told quite curtly that they had “been doing this for a number of years now”.

As a former teacher, I did have to fight the urge not to shudder, as this is a variation of the worst sentence to hear in education (or indeed any industry) which is “we’ve always done it this way”. I’m sure you have, but that doesn’t make it right. It’s not working, I can see it’s not working, and unless you can explain complex bodily functions through the medium of interpretive dance, you need to step back and think again. Creative thinking is the most vital commodity in finding techniques that work for teaching anything. Trust me on this, if doing the same thing over and over again isn’t working, then a new approach is needed. 

Or I could be completely wrong, I don’t know. I give up sometimes, as long as my daughter is still happy to go to school and isn’t coming to harm, I will continue to insult the washing machine with the endless loads – at least with the new solar panels the electricity isn’t bankrupting us any more.

(A guest post from the fae dad)

Let me tell you about my morning.

After I was showered and dressed, I collected our fae and she trotted obediently downstairs with me. She helped me set the table, make her breakfast, and empty the dishwasher. She ate all her breakfast without any trouble, came back upstairs with me, got dressed, and stood playing Khan Academy games on her iPad whilst I brushed and braided her hair.

Once more down the stairs, and she put on her shoes and jacket happily, gave me a hug, then got into the car to be driven to school. I waved her off as usual, then closed the door and leaned back against it, taking a couple of deep breaths as I waited for the stress headache to fade.

It struck me, then, how utterly bizzare it would seem to an onlooker that I might be in any way stressed by barely an hour spent with such a helpful, sweet-natured child. She’d done everything asked of her and more besides, the whole morning ran like clockwork. Far from the screaming fits and battles that might come to mind when people imagine a stressful morning with a neurodivergent child. What on Earth was my problem, they might wonder.

And it’s not a bad question, because I wonder myself sometimes just why I feel stressed in situations that really don’t seem to merit it. Hence the idea of “invisible stress” – stress caused by factors that aren’t readily apparent.

The first, and most obvious, is the simple ever-present possibility that, however well things might be going, a meltdown might be mere moments away. This is the fae parent’s Sword of Damocles: Imminent catastrophe, hovering nearby at all times, held at bay by a single thread that may snap without warning at any moment.

I honestly can’t count the number of times our fae has been happily sat doing some calm activity – drawing, reading, playing with toys, etc. – only to suddenly be replaced by a grinning demon screaming around the room. What sparks the change? I wish I knew. It can be anything, or nothing. It just happens sometimes. It means that no matter how calm and peaceful things may be, one can never quite relax.

And then there are the preventable-in-hindsight meltdowns. The ones that do at least have a cause, even if it’s only one that can be identified after the fact. These are the ones responsible for most of the “walking on eggshells” moments that you eventually learn to live with when you have a fae child. The ones that can be set off by asking them to do one too many things when they’re insisting on helping you. Or not allowing them to do one specific thing that suddenly is the only thing in the world they want to do. Or doing something they didn’t want to do only for them to decide that they wanted to do it after all and now they want you to make it unhappen so they can do it.

These are the things that make having a fae child be less “a stroll in the park” and more “a tightrope walk over a pit of spikes” – broadly they’re both dealt with the same way, by putting one foot in front of the other, but the consequences of a single mis-step are rather more severe in one case than the other.

There is an ever-present balancing act with a fae child, you’re always having to focus on making the right call: Not too much, not too little. When she’s eating breakfast, for instance, she gets distracted and forgets to eat. So she needs reminders. But, too many reminders, and she feels pressured, and stops eating. So you have to make call after call as to whether one more “eat your breakfast” will be a welcome reminder to a hungry child that she does in fact have food, or an unwelcome demand to eat that causes her to refuse to take a single further bite.

And the clockwatching. Oh, the clock. The morning routine has to run on time. There’s a little leeway built in, of course. But too little and you risk having to rush, and a single delay can be a disaster. Too much, and you risk completing the routine too early on good days and then having to work out what the hell you do now: A neurotypical child might understand “we’re running early, so just this once watch cartoons for 10mins” but it’s not an option for a fae. If you watch cartoons on a good day, she’ll expect to watch them on a bad day. And then she’ll kick off if she’s not allowed to, because she’ll see it as an unfair punishment.

So the routine needs enough flexibility to not feel rushed and to handle the odd problem; but not so much that you can have too much time and no routine to fill it with. Mostly, this is dealt with by her hair: It’s one of the last things done in the morning. On a day when we’re running late, it’s brushed out quickly and put in a simple braid. On a day when we’re running early, it’s brushed more thoroughly and put into a more intricate and time-consuming French plait. But there’s only so much this can buffer things. So one watches the clock and tries to keep everything happening within a window only a few minutes wide, without ever making the fae one feel like she’s being rushed, or letting her mind wander so far that she’ll resent being brought back to what she should be doing.

The morning routine would appear, to an onlooker, like an easy, calm hour spent with a calm, sweet-natured child who helps with everything and happily does as she’s asked. But under the surface, it’s an hour-long ordeal of trying to get every single thing right; of keeping an eye on the clock; of making all the right calls; of keeping an eye on what she’s doing and what she might do next; of trying to foresee all stumbling blocks and remove them before reaching them; of balancing on a mental tightrope that might snap at any moment with no warning.

If you get everything right, it looks like the most simple, stress-free morning imaginable. The stress doesn’t come from all the bad things that happen. It comes from all the work that goes into preventing them from happening in the first place.