Tuesday, 21 March 2017

It's Not All Sunshine & Roses

On more than one occasion in the past, I have been accused of "perpetuating Social Media BS". That is to say, apparently deliberately propagating my 'feed' to create the illusion of a Perfect Life.

Conversely, there have been (many!) other occasions people have desired to tell me that I rant too much on Social Media, I say too much, I over share.

Happily for me, other people's opinions no longer rank highly on my list of Influences Over My Life Choices. In fact, beyond common decency and human kindness in general, they barely qualify at all.

But, none the less, this anomaly inspired me to write this particular post. 

We've had a really Good couple of days.  These were preceded by a really Bad couple of weeks - changing of the seasons has a huuuuuuuuge ripple effect on my two as their sensory sensitivity picks up even the most minute changes that you and I can just shrug off, if we even notice them at all.

This year I dug even deeper.  I took DD out on Friday night, to see Beauty & The Beast.  We went for dinner first at Pizza Hut - as this is acceptable to her, she likes the food there and the staff are nice.  So we had dinner, and the whole time she chatted to me about things her brother does that annoy her.  Believe me when I say I was not in the mood for this.  I wanted to be about a thousand miles away from the pair of them, who have been rubbing each other up the wrong way ceaselessly of late!  But, despite all the well not fine.  Obviously they are siblings, so discourse is a given, but the past couple of weeks have been tumultuous. So, I figured 'kill 'em with kindness'.  First I had a night out with DD, listening to her list of woes.  Then, the following day I sat with DS and did some Social Stories - trying to work through some of the feelings behind his actions, and to show him how those actions might 'feel' to other people.  Quite surprisingly (despite my terrible drawing!) he responded really, really well to this and was able to articulate (for the first time) that school had made him 'Big' because people did not understand his ways and he felt attacked a lot of the time.  So we were able to talk through this, and I was able to reassure him that Home Educated children are not like school children - they are more used to neurodiversity and they constantly have many, many adults around to help with any difficult social situations (something horrendously absent in the school playground - one or two overstretched dinner ladies between several hundred rampaging hordes......).  All this lead to a change in the tide, and we had a fairly peaceful Saturday with relative harmony restored.  And a lovely family trip out for the day on Sunday.

But of course that's not the whole story. 

Let's just look at the last two days.  Sunday we went out, on a planned trip, that we had done lots of preparation for - talking about, situation setting etc.  But DS did not want to go.  This is because at the weekend DS is allowed to play on electronics.  We only have a very limited amount - basically they have an original Nintendo DS each, with a couple of games, and Hubby & I each have Kindles - mine has Minecraft pocket edition on and his has a Star Wars game.  That is the total sum of electronics available and the kids are only allowed them on the weekends.  It's still enough for DS to obsess about.  So, although he was allowed to bring his DS on the train, his lightning fast brain was doing the math that he wouldn't get as much time as if he was at home......  So this caused the initial moaning resistance, the dragging of heels and general complaints of how life isn't fair because they are being 'made' to go out against their will.........

Fast forward to the station - all is well as it's DS time while we wait for the, unusually on time, train.  We find a table and 4 seats together and we're all set, peaceful journey while erstwhile passengers glance on judgily for us 'one of those' families who are all on electronics.  I smile inwardly, knowing this is the only waking break I've had all week......

DS happily ticks along, clicking & humming and we let if waft over us.  They are happy sounds.

And then we arrive at our station, mercifully the last stop.  Because it is then we discover that DS has not fastened the lid on his water bottle sufficiently and it had leaked (minimally I might add) is his bag.  For my poor pumpkin this is a full level crisis.  His bag is wet (damp) - the plastic wrapper of his sandwich has a few water droplets on, The World Is Wrong.......     It takes several minutes for us to leave the train - DH no use at all as he is trying to rationalize with DS, drying the sandwich wrapper and telling him 'it's fine'.   It's not the fine, the sandwich is not fine, the bag is not fine, his life is Not Fine. 

We are teetering on the brink of a full and final meltdown.  I dispose of the offending sandwich, soothing how 'rotten' that was to have happened when it was his 'best sandwich in the world' and that, although it doesn't fix things as his 'best sandwich is RUINED' his crisps and yoghurt and chocolates are dry.....   He gets a bit quieter, a bit stiller.  I place his DS and games safely in my Dry bag, so now it is only the Bag itself to contend with.  It does not FEEL wet but I know that does not mean it isn't Wrong.  We compromise on turning the bag inside out, so that the 'wet' will not touch his coat and the air can dry the inside of his bag. This way he can also feel the straps of his backpack still on him and know the bag is not gone.

We start to walk, slowly but surely. He holds my hand, the screaming has stopped, he is calm but vexed.  I wait, and walk slowly with him for a few moments, until I think he may be ready for distraction.  I count to 20 in my head, just a little longer, then, as we walk, I say (as casually as I can) "If you could be in Star Wars and you could have one vehicle, one weapon and one friend, what would you have?"   This is a familiar question, a safe question, a question he asks me A lot when he wants to have a conversation.   It's a risk, a gamble, but it pays off - he starts to reel off his choices and his reasons and I know we are back on safe ground and he is ok.  This has taken about 25 minutes.

We get our destination.  By and large it is ok.  He is happy with what he sees, DD less so - but she is quickly diverted with the offer of my camera and goes about obsessively clicking the shutter over and over.  After the first 50 or so blurred shots of the floor she settles to actually taking pictures.  This is Good.  It is safer to look at New Things through a lens.

Back to DS, we are having a wobble because he wanted to try on a helmet a  member of staff is proffering but she tells him he cannot, he can only hold it.  For a moment I stiffen, this could go either way.  The woman responds BRILLIANTLY.  "That's disappointing isn't it?  Shall I tell you where you can try one on?  I really like your hat, woud you like to feel this hat and see how heavy it feels...."  and DS unstiffens (as do I) and we are ok again. 

And this is how the trip continues.  It is a success, but it isn't an easy one.  The costumes they can try on feel 'wrong' - their skin itches, it is hot.  People don't say excuse me, they push ahead when my children are waiting - my children wait because those are the rules, so why don't other people?

We go to the caf√© for a cup of tea and a sit down. It's closed,  So we go to the one on the other side of the venue, naturally it's packed.  DH has gone head to find a table and has successfully done so. But all the tables are for 6 or 8.  This means, other people sit with us.  Unfortuantely they are an elderly couple, clearly not familiary with 'this modern autism' - the woman is coughing all over my daughter, the man budges too far up and shoves my son, then tuts at him for asking for salt.  I want to smack her ignorant face.  I don't. I swap seats, so my body shields them both from the intrustion.  Neither of them will eat their chips now, I know that.  She has soured them with her coughing and her uninvited opinion on the salt.  So they sit and go cold on the plate.  We leave as soon as we can.  The children cope brilliantly to be honest.

One more exhibition then we take our leave. There's lots more to see but our time is up.

We escape outside where there is lovely open space and we have a drink and a snack by ourselves, on our own.  Then a play at the playground for lots of lovely sensory feedback before we make our way back to the station.  

There's a little bit of screaming and rocking from DS getting the lift, and an almighty scream that lets itself loose on the train, but otherwise we make it home eventfree.  DD is stroking her soft toy and buried in her Nintendo DS so she's managing fine. They both are, in their own ways.

Back at home DS now wants to start the day with the home electronics - so we have to go through the whole timeline that we have 'spent' the day and now there is no more of this particular day, because we did a Different Thing.  This is hard, we have cuddles and reassurance and we compromise with watching the movie we promised but no electronics.  Infact we give him the choice - he can watch the movie we promised or play electronics for an hour.  He chooses the film, because it's longer lol, but we are happy he understands he's had to make a choice.

DD is happy to watch the movie but will not sit on any of the sofa's because they feel wrong and other people may have sat on them and they may not be clean..... So she sits on the floor.  She is hungry but she is too tired to eat or chew (food is a massive issue for DD - the smells, textures, sight, chewing, swallowing - she finds it enormously fatiguing). I give her a couple of Mr Kipling fruit pies, and she wolfs those down. I insist on her drinking water with them.

We get to bed time, with all the prompting and help that comes with that.  DD takes her medication.  DS gets up out of bed on and off for about an hour an a half, before finally settling to sleep.  This is because, even on a Good Day, there is Delayed Processing and Prevasive Thoughts.

DD sleeps until 3.30am when she wakes with a nosebleed, because - spring = hayfever.  Possibly also delayed processing = compulsive nose rubbing/ repetitive behaviours.

Bed changed, child cleaned, washing machine on - reassurances issued, DD is back to bed, as am I.

So that's one day, one day of the two days I said we'd look at.  I think I will stop there as I'm guessing you get the idea?

And this was a Good Day, a Happy Day, a Win.

And yes, I post the photos of the good moments on social media. Because I love those good moments, I cherish them.  Probably more than most - because they are hard won.  My angels battle, through so very much, so very often, they more than deserve their smiles, their moments in the sun. Damn right I celebrate them!
And I do share about the other stuff.  I try to do so sensitively, because my children are growing, they do not want to be named, they do not want to feel 'shamed'.  They battle through their challenges valiantly and I respect their right to privacy.  They are happy for me to write this Blog, I have their consent, because they want me to share and educate and raise awareness and acceptance of Autism. That does not mean they want their challenges publicized word for word, with humiliating pictures. Like me, they want to celebrate their victories, their successes.

If people think that's fake in some way, so be it.  It's not.  Our lives are very, very real.  Maddeningly, Painfully, Frustratingly so at times.

So no it's not all sunshine and roses.  But when the sun does shine, you bet I'll be out taking pictures of those beautiful roses and sharing them with unashamed pride.





2 comments:

  1. Great post. You keep doing what you're doing Mumma! Sx

    ReplyDelete
  2. Great post. Good moments are special and good to look back on /share. X

    ReplyDelete