I need it to be bedtime!

It’s 7pm and both my boys are in bed because I need it to be bedtime. I know it’s pretty early and this is earlier than they would normally be in bed but for tonight I need it to be bedtime. One of my boys is watching tv in bed and the other is watching his tablet – I’m very aware I’m probably breaking every super nanny rule of a good bedtime routine but tonight I don’t care about any rules I just need them to be in bed!

I’ve heard “mum” being shouted, screamed, whispered about 1 million times today and the demands keep coming. The demands never really end; I’m up 3 or 4 times in the night to do position changes, 12am, 2am, 3.30am, 5am, 6am. Has my day started? Did the night before ever end? And so there’s only ever a few hours break until someone needs me again. “Mum I need a drink”, “mum I need the toilet”, “mum where’s my dot-to-dot book”, “mum can you help me”, “mum I’m not comfortable”, “mum write me sums”, “mum my legs need moved”, “mum where’s my car?”, “mum mum MUM!!!” They rely on me for so much – one needs physical help for mostly everything and the other demands so much mentally.

I’ve spent all day sorting food & feeds; one of my boys has a tummy button so is mainly tube fed and these feeds need connected on & off throughout the day & night to ensure he’s getting the correct amount of calories and nutrition, the other needs major encouragement and negotiation to sit down at the table and eat “yes I know that sauce is a deeper colour but it’s the same”, “the pasta isn’t bigger it’s just the same”, “let’s use the timer”, “a few more spoonfuls please”, “yes I know you wish it was just fish fingers”. I need to cook my own dinner but there’s a car race going on around my bunker; moving any of these cars or demanding that the race is finished will result in a meltdown – I do not have the energy to deal with a meltdown so I will work in between these strategically placed cars. The race gets louder and louder, the wheels running over the work top in a repetitive motion. I can no longer hear my music playing, I can’t hear anything.

Autism means facts have been thrown at me all day: “mum did you know it’s 37 degrees in Egypt right now”, “the time in Australia right now is…”, planet Jupiter is this big…”, “this movie is 102 minutes long”, “2 years ago today this happened”………..

Sma means I have a son who is a master at communicating – it’s the only way he can get what he needs or wants so his little voice chatters all day “mummy can I talk”, “mummy I’ve got something to say”, “mummy I need to tell you something”.

We went out for a bit today and going outside of the house is like a marathon operation. Just getting the boys ready and into the car is exhausting – lots of lifting then planning about where we’re going, what we’re going to do. Then there’s the bags of stuff we need and wheelchair to sort. It’s hard work physically pushing a wheelchair around and transferring to the car. We all need a rest by the time we get home.

I love my two boys, I love their differences, I love their quirks, I love being their mummy – I wouldn’t want anyone else running around after them – it’s my job and I love it!! But right now I’m tired and I need them to be in bed so I can breathe for a while, so I can hear myself think, so I can have a rest. If there’s any other parents in this position right now – I’m with you – here’s to a few hours of quiet before it all starts up again in our different kind of normal.

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You surprise me

Autism. Routine. Structure. Predictability. Sameness. Uniformity. Repetition.

Surprise?? This word very rarely features in our day to day life. I know what Caleb will say as soon as he wakes up, I know what he will choose for breakfast, I know what movies he will pick to watch, I know what games he will play, I know how he will react to change and I know what situations will make him anxious. I like to think I have a fairly good grip on his reactions and I can usually predict what his next steps will be but just sometimes he will do something completely unexpected and he will catch me by surprise.

One of these surprises came last week. Caleb attended a school trip to a pantomime. His school had been lucky enough to be able to provide a whole school trip to the pantomime all free of charge. There was much excitement and a realisation that this was a great opportunity for the kids. The trip would involve a 60 minute bus journey, the show itself and the bus journey home again. An early lunch was scheduled and the pupils would all return to school at tea time. I signed the permission slip a few weeks before the event wondering if Caleb would actually go.

We started preparing for the trip a few days before; we spoke about what a pantomime is, what Caleb could expect to see, we watched clips of panto’s, we talked about the theatre, we explained it would be dark with bright lights on the stage. We went over the time schedule – how lunch would be early, tea would be late, how the bus journey might be longer than 60 minutes if there’s traffic.

He worried about it all – his tea being late would mean his bath would be late then his bedtime would be late. But his lunch was early and that would mean he would need the toilet earlier and would he be able to go to the toilets at the theatre. What if he didn’t like the noise – he didn’t think he could eat at the panto with all the people there. I reassured him over and over, told him he didn’t have to go. I wondered if I should make the choice for him; I didn’t think he could cope with this and I didn’t want it to traumatise him from future trips. I didn’t think he’d like the noise, the busyness, the different time schedule. I thought he’d be too uptight about all the arrangements to even enjoy the show. However, he was adamant that he wanted to go and with the support of the school I felt I had to give him the chance. I reluctantly dropped him in the playground to wait for the bus.

I thought about him all afternoon – was he coping?, had he eaten?, did he need the toilet?, was he enjoying the whole thing? Then messages on my phone alerting me the buses were stuck in traffic and they’d be late home. We’d prepared him for this but I figured the meltdown would be inevitable on his return. I got his room ready to have some cool down time when he got back – I was certain the whole experience would bring a meltdown when he got back to the safety of home.

Surprise: I collected my little boy from school at 6pm and instead of finding a boy ready for meltdown I found an excited boy ready to tell me about his trip! He was so excited that he was at school late, he laughed all the way home as he recited the jokes from the panto, he was animated and loud as he acted out the scenes he’d watched. He told me he loved it and that he’d had a great day! Later as he got into bed I realise we’d had no meltdown. It seems such a small thing but I felt such pride that he’d done it – he’d managed a school trip and managed it well.

I like to think I have a fairly good grip on his reactions and I can usually predict what his next steps will be but just sometimes he will do something completely unexpected and catch me by surprise.