Sorry it’s been a while

So, unlike most of blog posts that are entirely, or mostly, about my darling little daughter, this one is all about me, me, me. 

I have recently started the process of unmasking my own neuro-spicy traits. This has been, to put it mildly, traumatic. Also has unveiled a few things that I until recently didn’t realise. On the top of the list is: I am, for reasons best left to my demented mind, unable to write anything in my own home. Seriously. I have tried the living room, dining room and my own bedroom. In previous homes, I have managed by having an office or office space but in our current home, despite being the biggest we have ever had, I do not have a space I can dedicate to writing. 

So, for the last two years or more, I have been writing all my posts in coffee shops and soft-play venues while my daughter was with childminders or otherwise engaged. About 6 months ago, she started to become resistant to the idea of going to her childminder, and as of three months ago, it became apparent that – regardless of whether she wanted to go or not – she simply didn’t have the spoons to. So, I lost the time to write, that’s not a problem but it meant that I never found a good substitute for that time. Until now. 

I have recently changed the gym I am a member of, and my new one has a wonderful members lounge that has wifi, coffee and tables. Also: an adult-only area where talking is frowned on, music is personal only and a log-burning fire is the only thing shown on the TV. It’s the closest thing to Arthur Conan Doyle’s “Diogenes club” that I have ever found. I am in heaven. So, normal service will be resuming, hopefully as soon as the Easter break is over. 

Next: As an adult, I have been debating going through the process of being formally assessed for autism. Having completed the same diagnostic tests that were performed on my daughter (scored from 0-30 with anything over 20 being ASD) and being told my numbers were between 25 and 27, and thinking that explained so much, it occurred to me that this is something I should address: there is a strong probability that masking for years contributed to, if not caused, the nervous breakdown that ended my teaching career. On sharing these concerns that I may be neurodivergent with my closest and oldest friends, their precise reaction was “Well butter my bum and call me a biscuit”. To which I responded “No.” to peals of laughter and the word ‘exactly’ being uttered, which I took to mean they were not shocked by the announcement. 

So, before considering reentering formal employment again, I thought I should see if some provision could prevent another one. So I contacted my GP, who informed me that waiting list for start the assessment – just to START it – was 10 years. 10 YEARS?! Apparently I’m not supposed to work. Seriously, how can it take that long? Then I was told if I wanted to go private it would be much quicker. Thank you, captain obvious. Here’s the thing: I don’t have £2,000 to spend on something I already know, and I resent having to spend that much money so that I can work: it seems counter-productive to me, when in fact I don’t actually need to right now. And in fact, I can’t go back to my original career, as there is no one who can look after my child full time. 

So, I have joined the long list of others I know on “not formally diagnosed but should be and is now struggling to get help” but I am truly grateful that things have moved forward enough that I managed to secure the support my daughter needed. 

Still, it takes at least 2 years for children to be assessed, which to me is also mad. 

So, take home points of the meandering post:

sorry it’s been so long

adult ASD assessment is a stupid long time

I like cafes. Just don’t talk to me.

Rules are rules for everyone

Rules are rules for everyone. 

Our fae recently put her grandmother in ‘timeout’ for ‘17’. 17 what I’m not too sure. I assumed 17 seconds. At least, that’s what I told her when I finished laughing. I have mentioned (I think) in the past how our daughter likes to care for everyone. She mimics how she has been cared for: if you’re upset, you will be cuddled. If you’re sick, you will have liquid paracetamol; and if you have a cut (no matter how small) you WILL have it doused in sudocrem.

So, it only makes sense that she expects that the rules that she abides by also apply to everyone else. I have lost count of the number of times that we have been told to calm down and count to ten when she feels that we need it. Normally whilst driving. This was brought to a head the other day when her grandparents visited. This is something that, I’m pleased to say, has become more regular. But just before they left, her grandmother had the audacity, the bare faced cheek, to leave the room to retrieve her shoes without getting permission from our daughter (who is very sure that she IS the queen thank you very much) and, as such, found herself summarily put in a time out. This did seem to stun her grandparents, and I will admit collapsing in laughter probably didn’t help the situation. She decided that grandma was in ‘prison for 17’ – not sure why prison, nor 17 what, so we assumed 17 seconds and prison turned out to be the comfy chair (I think she absorbed some of the Monty Python I watched whilst pregnant) so it was not a long delay. 

So, as of now, everyone is very clear they need to announce their departure from rooms or face the wrath of the rule-enforcing fae that lives with us. I would like to say this is the weirdest thing that has happened, but that would be a lie. 

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!