Blog posts, musings, and thoughts on life in general

The lake at Blenheim PalaceOver the Christmas holidays so far, I reckon our 'nice bits' to 'hard bits' ratio is probably about 70:30. Possibly slightly better, if you take in to account the fact that the hard bits are no where near as hard as they used to be. Last year's Christmas ratio was about 20:80 at best I reckon, and looking back at the blog from this time last year it seems T was going through a bitey phase as well. The worst we've had this holiday is hitting, and even then I think it's only been once or twice.

Gosh, it's so weird writing that, when I think back to posts I've written in the past describing the CPV that was happening multiple times per DAY, for anything up to a couple of hours at a time.

Some of this change can probably be put down to the simple passing of time, but there are a few quite clear things I can pick out that we have done, or are doing differently.

1. Working on emotional regulation.

I've added a whole chapter on this in to my book (which - HURRAH! - actually now has a release date!) because, although it's quite a slow burner in terms of seeing results, over time it has produced massive change.

The key to this is consistency. And repetition. Lots of repetition. School are completely on board with this and have been helping out too - they have a visual chart for Tickle where he can select symbols for how he is feeling, and symbols to represent calming activities that he thinks will help. It has taken a lot of patience and reinforcement from staff, but at the last parents' evening his teacher told me that Tickle had spontaneously gone up to the chart (which hangs within reach in a prominent place in the classroom) and pointed at the 'sad' feeling. And, he had done this MID-MELTDOWN. He had been able to override the panic systems in his body for long enough to realise he needed help, work out how to communicate this to an adult, and actually go and communicate it. All whilst being triggered in a fight-flight state, and running around the classroom.

In case you're still unclear on this, that is nothing short of staggering.

Other ways we try to encourage emotional regulation at home include affect matching - mirroring the outwards appearance of Tickle's emotions, without the emotional energy. So for example, if he's shouting at me, then I might say in quite a loud voice "Gosh! You sound very cross!" - imitating the pattern of his speech, and the emphasis he has placed on words. It's important to understand the distinction here, as I'm not talking about copying what he's saying, or imitating him to try and make him laugh, I'm talking about matching his speech patterns and body language, but without feeling the emotion myself. If I meet his anger with anger of my own, that inflames things, but if I meet his anger with words that show I understand what he's feeling, and reinforce this with my tone of voice and facial expression, then he knows I understand what he's feeling. Sometimes we do this quite naturally with babies and toddlers, without even realise what it is we're doing. It's a way of reflecting those feelings back to the child in a safe way, without emotion or heat, so they can observe and understand what is going on. When they're feeling and emotion, they're too close, too involved to be able to be reflective about it, but when we show back to them what they are expressing to us, then they can observe it, and think about it from a detached point of view.

Anyway. This is one of my favourite subjects, and I'm getting a bit carried away - you'll just have to read it in the book! ;)

2. Prioritising Tickle over other family members

Emotional regulation has been a long term goal, but this was something we did this holiday which took no effort and made a huge difference. There's often quite a lot of pressure, especially at Christmas, to do 'traditional' family things. Go and see relatives, play games, spend time with extended family and friends. This year was the biggest we've ever done, as my dad and stepmum were visiting for Christmas, in addition to our 'normal' Christmas spent with my mum, grandpa, and brother.

I love my family very much, and I'm very aware that grandpa is getting old and probably doesn't have that many more Christmas' in him. I know my mum has to cope with feeding a lot of people, who are all arriving at various times, and that she really needs to plan out how that's going to work. My dad made the trip up specially, and this was the first Christmas I've spent with him in at least two decades.

BUT. I have to be realistic about what Tickle can manage. (And Fairy too, if I'm honest.) And seeing as he's got so good at telling us how he's feeling, I've really got to listen to him. So instead of going over to mum's for dinner on Christmas Eve, I completely changed all the plans last minute and announced we were only going for lunch. Both kids are happier at home in the evenings, and as it turned out, Tickle was very overwhelmed by all the extra people at Gran's house, and really would not have coped with that whilst hungry and tired. Then on Christmas Day, when we'd usually stay for dinner and in to the evening a bit, we went home around 4pm. There was a bit of a meltdown when we got there, but nothing compared to what would have come out if we'd insisted on staying for dinner.

At the end of the day, the rest of us are adults, and we ought to be able to manage our emotions by now. Tickle is still learning. Yes, my mum probably felt a bit disappointed that we went home, but she'll cope. (She is very supportive about all of this in any case, so there was no issue in that sense.)

3. Sensory stockings

This is such a silly, little thing that I feel a bit ridiculous even saying it, as we ought to have been doing this for years! Sometimes the obvious things just don't occur to you though, do they?!

This year, I put a lot of sensory toys in the kids' stockings, and actively encouraged them to use them to regulate throughout the day. Disclaimer: this wouldn't have worked as well with T if we hadn't done the groundwork in (1) above.

The biggest success was this light stick. Tickle hasn't really done much visual sensory stuff before, but he loved it. I've just bought two more to keep as back ups. The other big hit was a scented soft toy rabbit. Deep breaths are one thing that does work pretty well with T and the nice smell of the rabbit really encouraged that behaviour. We also had squeezy things, squishy things, chewy things, and of course, lots of chocolate! The squishies got broken fairly quickly, so I have purchased these to try instead. I'll let you know how we get on!

And that's it. Christmas is over, so now we're just on 'holiday' levels of disregulation, without the added Christmas bonus. A year ago, I used to dread school holidays. They're still hard work, but the thought of them no longer makes me want to cry, and I think that's progress..!

This year was my 39th Christmas as an autistic person, but the first Christmas that I have known I'm autistic. It's been interesting. One of the things I have found a little weird about exploring my autistic brain is that I keep getting these little moments of "Oh, that's why I've always done this...", and this Christmas has been no different.

I had a big one today. I've been reading lost of posts from other autistics on Twitter talking about coping with Christmas - the sensory overload, having to be social, and how they survive it all - all the while thinking that I've never really had issues with Christmas. I did have a little weep yesterday (Christmas Day itself), but that was because I had a stinking cold and didn't get enough sleep... wasn't it??

Today I had a bit of a realisation. My husband dances with the village Morris side, and Boxing Day is a big day for them. As I was driving over I had a sudden flashback to last year, sitting crying in my car waiting for Husband to finish dancing so I could go home and back to bed. When I thought about it, I realised I've often struggled on Boxing Day. It seems to be the moment when everything 'hits' me, and the more I thought about it the more I remembered regular Boxing Day meltdowns over the last few years. At the time, there was always something to attribute it to - we were going through a tough time and it had all got too much being the main one. Today I started wondering if there was something else to it.

In general, I am pretty bad at noticing when I'm getting overwhelmed until it really is too much. I suppose it comes from nearly four decades of masking. I will keep going and keep going, either until I keel over, or until the pressure is relieved, and then I keel over! I had a couple of meetings just before Christmas - both of them were only with one other person, and they were good, positive, and helpful meetings, but it was still too much. I got home and had to go to bed. It frustrated me that I hadn't noticed in time to be able to do something about it.

I'm trying to get better at noticing when things are too much, but at the same time trying not to spend my entire life in my pyjamas under my duvet. As it transpires, I did go back out with the Morris today after dropping Tickle off at my mums, but I think mainly because I knew I didn't have to. Husband is so incredibly supportive and was quite happy for me to go back home and spend the day watching TV if that's what I needed to do. That knowledge gave me the freedom to make my own choice about it.

My next step is going to be working out how to do this with the rest of my life. I've been approached about doing some work for a local arts charity next year, and I'm terrified at the thought of taking on an actual proper job instead of working for myself as a freelancer. I have absolutely no frame of reference for how to be successful as an autistic person in the workplace, and I'm not yet confident enough with my own needs and triggers that I can give particularly helpful guidance.

I know it's a cliche, but I will have to take it a step at I time I suppose. Keep trying to notice what's going on with me, and keep trying to work out what I need to do to be a fully functioning, happy, human.

Yesterday was tricky. I was doing a new thing that I'd never done before, and which necessitated me being around lots of noisy children for a prolonged period of time. (Tap dancing in a showcase, if you're interested.) When we got home, I told my husband that he was not allowed to talk to me until I came out from under my duvet.

Up until now, my duvet has been pretty much my only coping strategy, and as life is going through a difficult phase I feel like I'm using it all the time. Often I get home from work and go straight to bed. I've been eating meals in bed. I've been working in bed. It's good, because it does help me feel better, but it's quite limiting, and it's affecting my relationships with my family, particularly my children.

We had planned to go out for a family walk yesterday afternoon, but for one reason and another I ended up walking quite a lot of it by myself. I was feeling stressed out and overwhelmed. My brain was going at 100 miles an hour. I started to wonder - had I remembered to take my antidepressants this morning? Was I due a replacement hormone patch? Why on earth was I feeling so bad?

It occurred to me as I was walking that whenever I feel like that, my default position is to assume it's because I've forgotten my medication. Often I have. I take it, and sure enough, I'm feeling better within a day or two. The times I don't feel better again, well, maybe it's taking a bit longer to work this time. But yesterday, I had taken my medication, and I wasn't due another hormone patch - which forced my thoughts in a new direction. If it demonstrably wasn't that I was simply lacking in medication, then there must be another reason for how I was feeling.

I quickly realised that my short stint under the duvet hadn't quite got me as ready for being around people as I had hoped. I was overstimulated, and stressed out. I have one particular piece of music that I can listen to when my brain needs untangling (it's this, by the way) and I decided I needed to stop, right there, in the middle of the path, not caring what anyone else thought, and listen to it whilst staring at the trees. So I did.

As I started to feel better, my mind wandered. This wasn't a one-off. I feel like this a lot of the time, and have done for as long as I can remember. Can I really put it all down to not medicating myself properly?? Could it be that I have been experiencing sensory overload, which - unrecognised, and unmanaged - I have turned in on myself? Although I am autistic (diagnosed only recently) I don't really stim much; growing up as a teenage girl who didn't really fit in, it's not really surprising - I would have done anything to avoid standing out from the crowd. But at what cost? Stimming is really just a way for us to get ourselves balanced again, when one or more of our senses is a bit out of whack. If I was in the habit of regularly stimming, I wondered, would that have provided an outlet for the screaming in my head? Would it mean that I wouldn't need to spend so much time in bed? Maybe I could manage my feelings a bit better throughout the day, rather than storing them all up until I just couldn't cope any more?

Looking back at my life, I see the pattern repeated over and over. I push myself to the limit, and then collapse in a heap. After my GCSEs I was ill for months, and then had chronic fatigue syndrome for a further two years - which only went away properly once my A levels were over. When I started work as a teacher, I could make it through until about Easter, and then invariably I would have to take at least two weeks off school because I was so ill and took so long recovering. And even now, the only way I was getting through the week was by being in bed every minute that I wasn't at work.

A new thought started to form in my head. What if I could find another a way of regulating myself? Could I actually do a few small things, throughout the day, that would help me to cope and mean I had enough energy left to play with my children when I got home?

As I walked, I tried a little experiment. I tried flapping my hands.

A new thought started to form in my head. What if I could find another a way of regulating myself? Click to Tweet

It felt good. It felt like there was a lot of energy in my hands, once I'd flapped them, and a bit less of it bouncing around my head. I tried tapping my fingers against my thumb one at a time. It made a nice little pattern, and that felt good too. The pattern became the underlying beat for a song that was going round in my head. I began to feel calmer. All of the energy that usually roared around inside my head felt like it had a bit of a place to go, for the first time. I felt like I could stop and wait for my family to catch up. By this point we were headed back to the car and I saw a Christmas tree outside a pub, with lots of flashing lights. I stopped to look at it while I waited for them. It was lovely. Looking at the lights made me feel calm.

I'm going to experiment with stimming, and see what difference it makes. It feels a little odd to be doing it deliberately, but when you have been masking your autism for thirty seven years I think sometimes you do need to be a bit deliberate. Masking has become a habit. Turning my overload inwards has become a habit. I need to see what other options there are.

Today I've been playing with a squeezy ball that I originally bought to put in the kids' stockings. I love it. I have been experimenting with different ways of using it - running it over the backs of my hands and my arms, for example, but I like it best on the palm of my hands. As I'm writing this I'm stopping every couple of sentences for a squeeze; interestingly, as I've gone on the squeezes have been shorter, and there's been more time in between them. I have also put in a massive order at Stimtastic, and I am really looking forward to trying out my new stim toys and jewellery.

It hasn't even been a week since I got my diagnosis. This feels like it's going to be quite a long journey.

I know it's a bit early for the traditional 'looking back over the year' post, but I'm in a reflective sort of mood this evening, after randomly deciding to re-read a blog post which I wrote just after Christmas last year.

Something strange and unprecedented happened this week in our therapy session; the therapist asked us to consider whether we could stop sessions for the moment, because we seem to be - touch wood - doing alright. Unfortunately Tickle hasn't managed therapy for some weeks now, and it seems that he really isn't ready for it at the moment, but as his behaviour at home is more or less OK our therapist seems to think that we should just get on with life for a bit, and then maybe come back later when he's ready. It's a strange idea, having fought SO hard to get in to therapy, and particularly because we both know that without it our family would have broken apart in a rather spectacular fashion... could we let go of this security blanket?

And do you know, I think we probably can. Life is still messy and difficult, but we've got in to a groove and we're managing OK. Not brilliant, but definitely OK. Tickle still has meltdowns, but not on the same scale as this time last year, and he is now much more able to say that he wants a squeeze or a cuddle, and sometimes even to take some deep breaths himself to calm down. It's not like life is easy, but we are actually doing OK, for the first time in a very long time.

The downside of all this is that it makes for quite boring blog posts, but after everything we've been through I think I'll take that!!

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Tickle understands birthdays much more than he used to. We met him for the first time on my birthday; we'd brought cake, and we shared it, and he sang Happy Birthday to me. That's what birthdays were: cake and singing. Tickle moved in with us about a week before his sixth birthday. I still remember we had to practically drag him in to the toy shop to choose a present, and he literally pointed at the thing right in front of him. (He wasn't that interested in the presents on the day itself, but he did sing to his cake quite a lot.)

It's my birthday tomorrow. Tickle is quite excited about that, because he knows there will be cake. I'm working early tomorrow, so as there won't be time for presents in the morning we decided to do them this evening instead. Tickle was *extremely* excited about this, so much so that the excitement tipped right over in to getting really cross that he wasn't allowed to open anything, and WHY NOT I GOT ANY PRESENTS??

He actually coped pretty well, sat on my lap, and passed me things to open. It helps that his birthday is so close to mine - we talked about his cake, his presents, whilst eating my cake and opening my presents.

This year, Tickle has requested a birthday party - swimming, no less - and has chosen two children from his class at school who he would like to invite. He's also able to talk about what sort of cake he wants (beyond 'chocolate', I mean) and what he would like for presents (beyond 'chocolate cake'). It makes me a bit emotional, actually, as it's such a tangible sign of how far he has come.

My favourite moment though was when he proudly announced that he'd got me a raspberry and rad-ash-oh cake! (Pistachio, in case you're wondering!) I think that's what it will be called forevermore :)

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