Ostrich Time

I haven’t gone mad. Well.. I think I haven’t, but I have begun to wonder about the rest of my family. For reasons that now escape me, there was a time that I desperately needed my fae distracted. To this end, my husband came into the playroom and told her in a matter of fact tone that she needed an ostrich. 

I admit, the question marks that appeared above her head were the mirror image of my own. But with that mysterious statement, he strode out of the room and, true to form when confused, our fae followed him like a little duckling. They returned with an overly-extravagant feather duster – real ostrich feathers! In the corner of the room, unnoticed by me or fae until this moment, was an extensive cobweb. It was too high for our daughter to reach even with the advantage of the duster. But with help from her tall gym-going father, she was able to beat seven bells out of it with the duster. Apparently this was jolly good fun, and they went off on a cobweb hunt. 

To his credit, this did successfully distract her from whatever the hell I was doing. The downside is, now whenever she sees a cobweb, regardless of where it is or what time of day, there will be a squeal of “OSTRICH TIME!” At which point, two pairs of feet will stampede to the location of the duster and said cobweb will be eliminated with extreme prejudice. 

This is fine when it’s only us around, but other people seem terribly confused by the idea of waving a manically giggling child at the ceiling with a duster in the hunt of spiderwebs. Still, the house is cleaner, and it does distract her, so there’s that..

Finding our village

This week is our daughter’s birthday. I always find myself reflecting at this time of year over the struggles we have faced since her diagnosis and what progress we have made. This year there have been some striking differences that have made significant improvements to the lives of all of us. Our fae made some close friends at her Saturday support sessions, and through them we have got to know the parents of these children. Knowing other adults that are facing the same problems that you are at the same time, and being able to support each other, is something we’ve never had before. It means I’ve started having weekly bitch sessions under the guise of coffee mornings which are wonderful things for your mental health. The children have a regular playdate during the week because, unlike their school friends, they can tire each other out with out draining their social batteries.

More recently, my in-laws have moved up to us. In fact, this week, much to the delight of our daughter (and our relief) they move to a house approximately ten minutes from us. This opens the possibility of babysitting! We’ve not had a night out together since she was born, and the only night away I have had was when my father died – so not exactly a holiday.

Finally, after months of trying, we have sorted out her direct payment (see post on those) so during the school breaks it means we have 8 hours of support from someone who is known to both us and our fae, that is funded and will grant me some rest.

So, it seems we have found our . It’s small but has friends and family and professional workers in it, and for the first time I am looking at reducing my dependancy on antidepressants which is a big plus. It’s only taken 6 years.

Oh Routine how I miss thee

It’s the first day back at school for my fae today. Routine is being re-established after the school breaks.

Oh, how I have missed the routine! I mean, my daughter has as well, but I think out of the two of us, I was the one jumping for joy the highest this morning. But it was hard to tell: Unlike a lot of children, my daughter skipped down the path happily and burbled brightly about seeing her school friends again.

This at least meant she didn’t hear my wails of ‘DOBBY IS FREE’ as I bolted back to the car the moment the door closed behind her. 

I love my fae child, I really do. But I love her more when I can get a few hours every now and then to myself. Last week, I think I had a grand total of 3 seconds alone. After we returned home from the nightmare that was Christmas, we spent the week trying to settle our daughter. To this end, I suggested that we meet up with some of her neuro-spicy friends: She has 3 very close friends, all of whom are either diagnosed or on the pathway for ASD/ADHD/PDA or a combination of all three. Two of them are siblings, and all 4 of them get on like a house on fire – which is strange because I have a feeling that, if left unsupervised for any length of time, that would indeed be the result. 

The speed with which their mothers responded to my ‘how about a meetup?’ messages with variations of  ‘God yes! Oh you mean with the kids, I guess that works too’ gave me the impression that they too were feeling the strain.

So, instead of a brief foray in a local park, we ended up doing daily meets for 5 days straight. On the 6th day, to my great joy, my daughter finally slept through until 6am! I’m not being sarcastic: she hadn’t managed beyond 5 throughout the holiday, so this was a great improvement. We had been to three parks (one with steel dinosaurs), gone swimming, and her grandparents had come to visit (having been in America for the past month) and, finally, she was a tad tired. 

This was the first time my daughter has been to a friend’s house for a play date. The first time, despite being exhausted and having been there hours, she needed physical carrying out the house, screaming and crying. She cried all the way home. 

The second time, not only did she cry all the way back, but she tried to unfasten her seatbelt. In my haste to pull over, I scraped a wheel on the curb and ended up rather stressed. 

The third time, I gave her a lunch box, and she muttered under her breath the whole way whilst eating rice cakes. 

I’m hoping if there is a fourth, she will get the hang of leaving and accept that she will be able to go back, so it’s not the end of the world. Everything is such a trial sometimes. 

Still: school, routine, and normal service will now be resumed. Thank goodness!

Well thank crunchy that’s over.

This year, for the first time since she was a baby, we attempted to have Christmas at a relative’s house. This was not a decision we took lightly, or with any sense of ease. In fact, had my father not died in the summer, we would not have done it at all. But leaving my mother alone for the first season of celebration after his passing seemed unreasonably cruel. So, with that in mind, we loaded the car with us, the things we would need (a small back pack each), presents (several large bags of those) and everything we felt our fae would need to survive 4 days and keep any emotional regulation (a sports bag, inflatable bed, three suitcase size bags, 2 cuddly dogs and a boot full of ‘contingency’ blankets and sensory toys)

There was a time when we could go abroad for a week with just carry-on luggage. I miss those times. 

To her credit, she was an angel on the drive down: 4 hours in a car is enough to test the patience of most children, but she cheerfully babbled her way through several renditions of Rudolph the Red Nose Reindeer and Jingle Bells (to which she only knew the chorus) until she finally fell asleep.

She was happy enough to arrive, too. In fact, everything might have been fine, except she could not sleep. Seriously. For three days, she didn’t start to drift until midnight, only to be wide awake by 3. She is fundamentally incapable of being on her own if awake, and so would make sure I had to be with her, and while she can survive on such cat naps, I can not. Fortunately, I can survive on coffee, and alcohol. And both are in copious supply at this time of year.

We were – just about – keeping our head above water until the night of Christmas Day, where after spending the day in a house with 8 people – 2 of them her noisy but adored cousins – she was ready to sleep. This time, just as she started to drift, the noise from said cousins and their parents startled her awake. I don’t often (any more) consider fratricide, but thoughts in that moment did cross my mind. It did amuse me that my daughter’s first thought was to jump out of bed and demand to be allowed to march downstairs and shout at them. 

It took another hour and a half to settle her from her near-hysterical state and get her to sleep. By which point the offending parties had left and I had no outlet for my ire. It will keep, he has a 15 year old I can give my alcohol too next time we have a get together. Apparently, she is an aggressive drunk. 

All-in-all, our fae was out of spoons and I was out of coffee, so we came home a day early. Despite demanding to return throughout the preceding day, she cried for the first two hours of the journey. I have now adopted the audio book of “Go the F**k to Sleep” (read by Samuel L Jackson) as the road trip soundtrack.

So we are home. She has had a second Christmas made from the presents that we left behind because there was no room in the car. We washed her hair in a bath of lurid yellow water made from a bath bomb that was in the shape of a Princess crown, and she is feeling herself again. I know this because when asked how many crisps she had spilt on the couch she glanced briefly before proudly announcing ‘16’ and then demanding we go to soft play. Which is where we are now. 

So, Joyful Crimbletide, and season’s greetings to all, and remember this too will pass. It won’t be too long before the little darlings are back on routine and we can all work on losing the stone of weight we drank whilst trying to survive this week (no? Just me then).

Shh! It’s a surprise!

As it’s the season for giving presents and generally worshipping the Gods of consumerism, we have indulged with the masses. This year, following the success of the halloween party, we decided to host a Christmas party. I don’t know why I do this to myself: I stress for a week beforehand over food; the state of the house; the number and placement of decorations; and all manner of things. Then I stress for a week after over whether people actually had a good time or if they just said that to be polite; if I overdid it; and what am I going to do with the 6kgs of leftover crisps in a flavour that no one in the house eats. 

On top of all the normal party stressors (well, normal to me) we also had to provide appropriate presents, in appropriately selected wrappings, for the other fae that were attending. To this end, I limited the guests to what we affectionately refer to as the ‘neuro-spicy’s’: my daughter and her three closest friends, all of which have been (or are in the process of becoming) diagnosed with a neurodivergent condition. It makes for an interesting time, but honestly, at this point, normal children scare me and I have no idea how to relate to them. I digress. So, the presents were selected, and my fae insisted on helping to wrap them. To her credit, she did a passable job of choosing paper and ribbons. She also wanted to make sure that, regardless of cost, size or shape, they all had two to open, and that she could identify what they were. Kid logic, I guess. Or so I thought. 

As soon as they arrived – and I mean they had not got completely through the door nor taken off their coats – she was calling them to open their presents. She also informed them what was in them. Thankfully it was so chaotic that no one heard, and I was able to pull her aside and explain that the whole point of wrapping it was so the contents were a surprise; and maybe they would want to wait until Christmas Day to open them. She stared at me blankly, shook her head in a way that informed me that I was very stupid, and marched back into the room and started doling out packages, informing people “I’m not supposed to tell you this is a toy” or whatever. 

Fortunately, the kids were paying more attention to ripping open the paper than to listening; the noise drowned her out so the parents didn’t hear; and within 5 minutes everything was open anyway. 

Today is one of her last sessions with her childminder. I brought her present along, and once again, my fae insisted on knowing ‘what’s in the box’. Trying to hedge my bets – having learnt from the party – I tried not to tell her. At which point, she started undoing the ribbon. So, in despair, I reluctantly  answered with a generic ‘It’s toiletries’. She did the confused puppy head tilt and sniffed it when I tried to explain further. She then decided it was perfume (it’s not, but hey, let’s go with that!) 

So, she hopped out of the car and presented the bag to her childminder announcing ‘happy birthday!’ brightly (I corrected her to ‘Christmas’ and was ignored) And she handed over the parcel, saying ‘it’s perfume’. Now, our fae is still not the clearest speaker in the world, and what came out sounded more like ‘for you’ – for which she was thanked. 

“No! It PERFUME” she snapped.

“No, fae, it’s a surprise,” I try again to explain. This time I get the teenage-like “huff and eye roll”. Before she can try again, the childminder cottons on to what she is trying to do, and ushers her inside while smiling and thanking her, before telling me it’s fine as she didn’t understand anyway. 

So, I have learnt two things before the big day. 1. Don’t actually tell her what’s in the presents. And 2. Even if she does find out it doesn’t matter, no one will be able to figure out what she says anyway.

Season’s greetings, everyone!

Choochoo Santa

During the October half term, I attempted to fulfil a promise – made to my fae in August by her  childminder – of taking her on a train. I hoped to make it an exciting day out, as my mother, who was recently widowed, was up to see us for the first time since the funeral. As it turned out, a heavy rain storm prevented the train from getting to the station, so we spent an hour being rained on standing on the platform before I had to explain to her:

The train isn’t going to come

To get on said train we will need to get on a bus for 30 mins (this was after a 40 min car journey) – or –

We could go get hot chocolate. 

As she was as cold and put out as we were, she negotiated for hot chocolate with cream and marshmallows (as if there is a different kind!) We abandoned the whole operation, and alighted to the nearest cafe. I also threw in chips and chocolate cake, to sweeten the deal. It was, in all, a miserable trip, salvaged only by the application of copious sweets, praise and a new jacket. 

Last weekend, with a sense of foreboding, I upped the ante. Not only did I book train tickets: these tickets were for a steam train; on which she would also meet Santa! To prevent her from getting too excited, NONE of this was mentioned to anyone who may spill the beans until the day of travel. She only found out in the morning, when she saw the train logo on my email when I was checking the address. Unsurprisingly, she was vibrating rather than stimming, and her version of ‘are we nearly there yet?’wWas asked on multiple occasions on the car ride over. A car ride that she insisted we started 30 mins before we needed to.

As it turned out, the extra time was useful, as it allowed us to find tickets: in what is an elegant system, the toy that Santa gives out is differentiated by age. This is indicated by the colour of ticket on the table. Every carriage has at least one elf in it, that encourages singing, dancing and – whilst the train is stationary – games with the children. Our elf noticed that I was using hand gestures to help my fae follow countdowns, and started to do the same. 

I can’t praise the service enough. If anyone is in North England then the North Yorkshire Moors Railway is wonderful. It is run by volunteers, and the whole thing has really started the season with a lovely feeling for our fae and us. I would say that ear defenders are a must. The tannoy is too loud for sensitive ears, and by the end of the hour our daughter just wanted to go home. But she had a lovely stuffed dog (who is now named Wish) and had an excellent time. The enthusiasm of the volunteers really shows, and the train was lovely and warm even though it was 5 degrees C out. 

Now all I need to do is encourage her to stop wearing Christmas jumpers to school between now and the end of term. Wish me luck. 

The railway: 

https://www.nymr.co.uk

Have a look

Here’s Wish. A firm favourite

Parenting in easy mode

There is a “joke” that regularly makes the rounds online: you don’t know tired unless you’re ’parent tired’. Every time he sees this, my husband grits his teeth and tries not to snap that the people posting this (and it is always parents of neuro-typical children, as the rest of us don’t have the time) themselves don’t know tired, as they are “parenting on easy mode.”

It is an ongoing bugbear of mine – and of the mothers of other neuro-spicy children I know – that parents of NT children will frequently offer advice and counselling. Normally in a sage tone, like they have all the answers and know everything about our challenges.

Here’s a newsflash. If your child is developing at the normal rate: can survive and understand society in a way that’s deemed acceptable for their age; doesn’t routinely go home and crumple into an emotional or physical mess; can sleep on an average night without the need for chemical or hormonal treatments… then don’t give us your two pence worth. You have NO idea what we are facing with children who don’t fit the typical mold.

At present, I am typing this in a soft play, grateful that I don’t need to look at the keyboard (and that my husband will edit it to make it make sense and check the SPAG later) so I can keep my eyes fixed on my daughter. I can’t take my attention off her. She is continually trying to engage with other babies and their parents. She will try and adopt the parents, or encourage younger children on to equipment that is too advanced for them. Not out of malice, but because she doesn’t understand that smaller children and babies should not be on drop slides, and their parents may not approve of this. I also need to keep her out of the baby areas. I can’t tell her and expect her to play in the areas she should be in because she doesn’t ’get it’. 

I don’t need to hear about what works for your child: it won’t work for mine. I don’t care if your 10 year old will do what you ask, because you were ‘strict when they were young and told them no’ – good for you. My kid was non-verbal and *didn’t understand* being told anything, so explain how that would work. I don’t want to know that you toileted your youngest pre-birth and were teaching them calculus at 3 months. I don’t care. 

I have been told, as have others in my situation, that I should put her in time out or other consequences. These have no meaning for my daughter. She doesn’t understand why she is being punished, or even that it is a punishment, so there is no point. Thus far, the most effective threat we have found for her is ‘I will boop your nose’. 

Seriously. Not something that would work with most kids, but for mine it’s the best way of distracting her out of whatever she has hyper fixated on at that moment. She’ll stop what she’s doing (yay!) in order to gigglingly protect her nose from the ominous adult finger. It’s also something you can growl (or yell) in public and no one will report you for it. So, win-win. 

So if you’re parenting in easy mode, and you know or meet parents that have neuro-divergent kids, please do us all a favour and don’t offer advice unless asked for it.

‘‘Tis the season for miracles

Ever since Halloween ended, houses on our estate have been gleefully assembling their Christmas displays. I’m no humbug (at least not anymore, I used to be, but that’s a story for another post) but November 1st does seem ridiculously early to put up enough lights to drain the Eastern seaboard and cause seizures in the vulnerable. It also has sent my fae daughter into paroxysms of excitement every time we enter or leave the area. 

The shops, too, have had their Christmas wares in full display since September. I have been grumbling about being attacked with green and red glitter whilst looking for pumpkins for even longer than I’ve been bitching about the lights. 

That said, last week, in an excursion that will go down in history as one of our more notable miscalculations, we decided to take our daughter clothes shopping after school. This trip was prompted by picking her up, and once again being informed that she had managed to soak her ‘waterproof’ school boots. And despite the staff’s best efforts they were still a bit damp. Fine, we thought, we’ll go to a cheap clothing outlet (starts with ‘M’ and ends with ‘atalan’) and buy her some wellies that can be left in school for when the urge to jump in puddles takes her. 

All this, we explained to her whilst we sat in a coffee shop, whilst she chowed down on a mixture of crisps, chocolate cake and marshmallows. (Follow me for more great recipes!) She approved of the idea, so off we trotted.

Upon entering the store, her eyes became saucers at the sheer amount of sparkly clothes, the Christmas music, and the matching pjs that came in sizes for her and us. We realised that we had made a terrible mistake when she took in the wheeled basket that was just the right height for her to push as a mini-trolley. With a squeal of delight she was off, and the only criteria for her choices seemed to be ”Does it fit me? And if not, will it fit one of my stuffed toys?” We were putting things back  on the rack as fast as she was trying to take them off, in her own version of Supermarket Sweep. By the time we reached the footwear section, she still had found a set of pjs with eye-mask; a princess top; and a Christmas jumper – all of which were somehow essential to her mental health. So £60 later we finally managed to crowbar her out the shop we’d gone into for some cheap wellies.

That night, she cheerfully changed into her new pyjamas and donned the mask.. and something magical happened. Within minutes, she was asleep. Seriously! This child who views unconsciousness as her mortal enemy, one to fight with her last breath was … asleep. She was so exhausted by her lifelong battle against slumber that just being forced to have her eyes shut was enough for her to drift into the arms of Morpheus!

Not only that: because the mask was thick, she didn’t care which lights were on. The same thing has happened every night since. This thing is amazing! 

I wish I’d known years ago that all it would take to get her to sleep was a set of pyjamas with a matching mask. Not only that: now she will wear the mask while the Pjs are in the wash. So that’s £60 well spent as far as we’re concerned. 

I went back today and got another set that was a size or two bigger, just in case she grows again: no way am I losing this miracle any time soon!

Reading in the dark

Our daughter caught a virus at school. I think she has a respiratory infection; my husband is firmly in the ‘just a cold’ camp. Either way she has a cough; bunged-up nose; and, most, recently, a sudden aversion to any light in her bedroom when settling at night. She started by trying to hide under a cushion, but this made it hard to breathe, so she tried to bury herself in my chest. This made it difficult for me to leave, and consistently work her up every time I got off the bed. Eventually, we bit the bullet and just told her the stories that we could in the dark – the ones we have memorised.

Which is all very well with simple stories like The Gruffalo and Stickman, but her most cherished book/nighttime read is The Rime of the Ancient Mariner by Samual Coleridge. Which is somewhat longer, and has more challenging prose. My husband is very good: he can do, I would say, 99% of the poem without prompt. But every now and then, it is nice to be able to check the start of a line or verse. 

So, we bought from our favourite online river a couple of book lights that proclaimed ‘low level’ light settings, allegedly ‘perfect for nighttime reading’.

Long story short: they lie. They lit up the room like a Christmas tree. My husband has taken to hiding his light in his hand to muffle it; mine fits snugly down my shirt, which does mute it but I then need to snap my fingers several times to stop said husband from staring at what the light is now illuminating. I tried duck tape but it blocks everything; if you punch little holes in the tape you get a wonderful constellation effect and then she just stares at the stars rather than sleeping.

It was a relief when she allowed us to use the side light again. Only for reading, mind, as she has now decided that using the book light to make a shadow theatre is an integral part of her evening routine. 

All this because of her love of long poems. A while back, we bought an illustrated copy of Beowulf, but neither of us have the courage to show it to her.

Something wicked this way went

Why don’t we have a unified half term in England anymore? Letting each local authority set their own term times is moronic. If you have children who go to schools in different authorities it can mean that they never see each other in their half terms; teachers can have different weeks off from their kids; and the only ones who benefit are the travel companies who hike the prices of holidays for twice the time.

Anyway, onto my main post. 

As you can probably deduce, my fae has just gone back to school for the second half of the Winter term. This half term, I decided to try and do some nice things for her and, with the support of my In-laws (I would never have managed it on my own) – we hosted a Halloween party for her. I have never been to, let alone hosted, a Halloween party. I don’t know where everyone else turns when they have questions about anything from the practical to the philosophical, but I use google. 

A quick browse through ‘help I’m hosting Halloween’ and ‘Good ideas for children’s parties’ lead me down a rabbit hole of ‘what is a piñata?’, ‘Age appropriate activities for 5 year olds’ to a debate if beer pong could be acceptable for the parents, providing the kids didn’t have access to it. I quickly gave up with the ‘mommy blogs’ ( and for anyone who puts this blog in that category I take offence, I’m not that pretty, organised, happy or perky) which showed happy, shiny people standing with big smiles behind tables of home made food, with little cherubs with home face painted faces that all were recognisable as what they were supposed to be. I knew my party would not be that. 

Our party would have the parents outnumber the children; if they turned up in costume they definitely wouldn’t end the evening in it; and at least one participant would be in a wheelchair. It would be messy, loud, chaotic and much more fun then the staged photos. I gave up on google and headed to Amazon. 

An extortionate amount of money later, we were in possession of a set of decorations, plates, tablecloth and face-paints (which were for me, not them). I then remember that at least one child is vegan, and that they are made ill by animal protein, so it’s back to google for recipes. If I haven’t made it clear already, I am a big fan of online ordering: food and items magically arrive at your house. 

The day before the party I spent rearranging the house so the wheelchair would fit through the normally blocked hallways, whilst my in-laws did an amazing job of putting up the decorations. By the time my fae returned home from her childminder, the downstairs of the house looked amazing and she was clearly excited. So excited, in fact, that she had to get up at 4am the day of the party. Still it gave me 12 hours to make the cupcakes and cookies from recipes that I found online. It turns out if you put the cookies and the coloured icing in front of children, you don’t have to actually decorate, you can give it to them as a ‘party activity’ and they do it for you. Score! 

As for everything else: we fuelled them up on a few sandwiches; took them out trick or treating; and allowed them to collect their own bodyweight in candy. This was much easier than trying to stop them buzzing around the house like a swarm of riled hornets. 

By 4 (the party was supposed to start at 4pm but I accidentally put 3 on the book of faces, so half the guests turned up early) some of the kids were done with everything and heading home and some hadn’t even arrived; I hadn’t finished putting my costume on; and one parent had texted me to tell me that they had used temporary tattoo paint instead of eyeliner and so were stuck as a cat for the next 3 days.

My predictions of chaos were at least accurate.

I forgot the glow bracelets when we took them out in the dark; I didn’t get the time to put my face mask on; and we completely ran out of spiders for pin the spider on the web (seriously 4 kids, 30 spiders.. it should have been enough). The witch’s hats that were supposed to be hoopla targets were used as inflatable cudgels, and after fights broke out for it I think 6 kids are getting x-rocker chairs for xmas. My mother-in-law had a heart attack when one child shoved my daughter, but she blithely shook it off and roared at the offending child (who’s child doesn’t turn into a mermaid-dinosaur hybrid for Halloween?) and they went off happily together. Situation normal, apparently.

Everyone had fun, and two parents confessed to stealing the cookies out of the goody bags I sent home before their offspring had a chance to see them, so I guess they were a hit. So I think we will call the evening a success. 

Now a month’s break before planning the xmas party, bring on the eggnog.