Why is Life so hard Mumble?

The other day something our CH said broke my heart.  He laid faced down on my bed and said something that made me think. He said; ‘Why is life so hard Mumble?’  I wanted to cry but of course I couldn’t. I wanted to squeeze him so tight and stop all the difficulties he may face but of course I couldn’t.  My heart was in my mouth, I’d never heard him talk like that before, but it made me think two things; one that yes he was right, and two that as his parents whatever life decided to throw at him we had his back.

So then I had to think how I would find out what it was that was bothering him. You see when you have autism thrown into the mix sometimes you can’t just ask a question and get an answer. Don’t get me wrong, if I was to ask him about the Titanic, or the latest level on minecraft, he would probably answer me 😉 And I’m sure we can all think of a time anyway autistic or not, when we’ve had something bothering us but we just didn’t wanna talk about it. So then add autism into that.

Autism spectrum disorder (ASD) is the name for a range of similar conditions, including Asperger syndrome, that affect a person’s social interaction, communication, interests and behaviour (NHS).

Of course I tried asking CH what was wrong. No answer, silence and then he began humming.  Sometimes he would give an answer to a question days later, weeks later, months even, we’ve had a response to something over a year after. CH has a fab memory, his mind seems to have many different compartments like a filing system with literally EVERYTHING stored in its rightful place, according to him. He has the ability to pull something out of his mind at a moments notice…… so long as he is ready to.  It all depends.

For example, CH has been asking us for years to go back to the place ‘with the brown floors and walls’, since he was about 6 years old. He’d not long been speaking then. Mr G & I have wracked our brains thinking of where this place may be, and we’ve suggested many different places all of which CH says ‘No it’s not there.’ But he won’t and literally can’t say where this place is. Yet Mr G and I have no clues! One day I’m hoping CH will pull the name of this place out of the right file in his mind and we’ll say ‘Oh yes that’s where you meant!’ But if not, that’s ok too. We may never get to know.

So anyway, I laid next to CH, mirroring his pose, quietly positioning myself.  I used a calm tone of voice, not too many words, thought of what things he liked talking about, things that make him tick, and used all that to try discover what was bothering him. Only I didn’t make it sound too obviously ‘question like’ if you get me. Then I leave a quiet space of time, give him enough time to process what I’ve said, I won’t speak again too soon. It might take CH a few minutes to process my words. That’s ok. We’ve used different methods of communication over the years; PECS (picture exchange communication system), photos, symbols, makaton signing, music, and more. Done it all.  CH had music therapy initially, then has had SLT (speech and language therapy) since he was first diagnosed, ongoing, it’s been a great help to him.  The truth is that sometimes we’re just not gonna get a response. That’s ok though, we understand, that’s ‘our’ CH.

Eventually after being laid next to each other for a while, CH said ‘Where’s my drink! No more talking.’ Ok. That was my cue to leave it there for now, and get his drink of course. So that was it, there was no way I was going to get anything more out of him at this point.  I had no clues or snippets of information to go on.  There was nothing on his home school sheet to indicate anything either.  What would you do? As an autism parent you become like the best ever detective, Cagney and Lacey, Miss Marple.. Columbo!  Yet I’ve also been on the other side of the coin, on the receiving end of CHs daily question times where he interrogates me (which you will see on twitter if you follow me 😉 @yorkiepuddings).

I could’ve left it there, but I knew that something was clearly bothering him. CH doesn’t like too many questions, or demands which he struggles with at times, unless it’s in the right setting or phrased a certain way, or not at all. Different things can have an impact on CH, including tone of voice, other noises in the background, any smells, where we are, how his day at school has been, the list is endless.  I’m not gonna lie it can be difficult of course, and no I’m not complaining, I’m just being honest, and I’ll never give up, you can’t, you’ve got to carry on and keep going, and why wouldn’t you?!

So here we are. Next Mr G tries to discover why CH said what he did. No joy. ‘No questions, no more talking. Get out of my room!’ That’s that then. Mr G and I sit down alone and try to ‘guess’ what we think has happened. It could be anything.  We wrack our brains, did we miss something, we go over everything a million trillion times.  We reside ourselves to so long as CH is safe and comfortable, he’s playing happily on his iPad now, then we will have to pick our moment carefully.

CHs dinner time comes and goes, excitement over progressing a level on his game passes by, lots of drink requests, and all so soon it’s time for his bedtime routine. It’s no different to any other day, yet we still don’t know why he said it ‘Why is life so hard Mumble?’

No more clues tonight. Is our CH struggling with something at school? what is it he’s found difficult? Is he being bullied? Is it school work? Teachers? Has he noticed differences and started to wonder? What? Mr G and I decided we had to accept this for today, and bank it for a different ‘moment’.

Reality is that it’s now a week later and suddenly a gem of a clue was inadvertently given by CH …. ‘We’ve friend accepted each other again Mumble after school, so now I’m too busy to talk, bye!’ Ahaaaaa a light bulb moment! It turns out CH and a school friend had unfriended each other on a game, and had become friends again online.  Ahaaaaaa!! ‘Is that why you felt life was too hard last week CH?’ I said. ‘Yes Mumble but you should know that!’ CH said, but of course! Of course I should 😉

There we had it. CH and his school friend had clearly got cheesed off with each other for whatever reason, but had made friends again. Reality is yes life is hard for many reasons. Being autistic doesn’t mean feelings don’t exist. CH still has feelings, in this case they were heightened for him, he couldn’t see the wood for the trees so to speak. Both he and his friend clearly worked it out, somehow, and it’s good that he experienced this and came away with a positive.  For CH it wasn’t just a case of him not wanting to tell us what had happened, he literally couldn’t tell us, he had found it difficult to communicate, he had been unable to communicate it in the way some people would expect, at the time you wanted the information.  Yet, if you think about it, he had being grown up to tally up what he was experiencing,  realising and commenting on the fact that situations and life in general is hard.  It’s just he couldn’t actually communicate what was bothering him to us, at least not in the way you probably think.

Life is hard. We all know that. Whether you’re autistic or neurotypical. Life doesn’t make any concessions for anyone, we’re all constantly evolving and learning, all of us in our own way – and who says which way is right or wrong?  Everyone has their own ups and downs. We know that there will undoubtedly be many other situations and challenging times ahead, yet we also know there are going to be so many fabulous positive things on the horizon, some fantastic pockets of greatness for us all to cherish forever.  Our CH has his whole life ahead of him, and one things for sure, whatever he comes across his Mumble & Daddy Cool have his back xx



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