Well after a couple of better nights, we were back to an early (3:03am) wake up call. Toby seemed very emotional when he woke up but one of the main challenges of being non-verbal is times like these when we play a guessing game to try work out what the issue actually is. His collar bone appears to be healing/healed nicely so theres no need for Collar Bone diary – week 2 (after my last post Collar Bone diary = week 1) He stopped wearing his sling or needing painkillers over the weekend and appears to be back to his usual excitable self – climbing and diving about everywhere.
Sometimes there’s no obvious reason why Toby struggles to sleep – sometimes we see a patten and we can almost identify triggers (changes, being over emotional, transitions (school holidays etc)) and other times we’ve got no idea why he doesn’t. Lots of autistic people struggle with sleep, their brains seem to be wired differently to ours and often they just don’t need as much sleep as you or I. Toby’s quite inconstant too as we can have great nights – the two nights before tonight he slept until after 6am (Praise God!) however I can’t remember the last time before that he slept two consecutive nights in a row. He can get up anytime between midnight and six however it often seems to be around 3am – and we class anything after 5am as a full nights sleep. We are currently waiting for the pharmacy to order in some different melatonin that we are going to be trialing to try and keep him asleep as it’s slow release as his current medication only works to help him switch off on an evening (and not keep him asleep all night.)
My guess this morning as to what is ‘bothering’ him may sound silly to some people. I would blame…the Octonauts…yes the Octonauts…the TV programs that he watches…alot.
Season 4 started yesterday on Cbeebies, we don’t have a tv licence as we just use iplayer and don’t watch anything live. We then use a Google Cromecast to cast programs from our phones/ipad to the TV. We feel this helps us to monitor and steer what the boys watch as some programs can really distress Toby and others make him overly emotional and obsessive.
Joel was pretty excited that season 4 started yesterday…he studied Biology at uni and the Octonauts follows the adventures of a group of random creatures (a polar bear, dog, penguin, cat, rabbit, octopus, bear and a half vegetable half fish creature call Tunip…it’s an interesting group) and these creatures explore the world under the sea – it’s pretty educational too!
Anyway Joel was pretty excited that Season 4 was on iplayer and so he put on for the boys (himself included!) while I made tea. Toby suddenly became pretty emotional and then started crying. I came in to see him and he just cuddled in and tried to hide under my top. We rewound the episode to the beginning as Toby really likes theme tunes and opening credits and he just clung to me and his whole body started shaking. I often don’t pay much attention to what he’s watching and I try to zone out as most episodes are pretty similar and they always end up saving the day…! However I looked at the TV screen and straight away I knew what the issue was. The theme tune had changed. The music was the same…the titles where the same…the main theme was the same…yet it was all wrong. The opening credits show the Octonauts ‘sounding the Octo-alert’ and sliding and running around their house getting ready to go out on a mission under the sea and it’s interspersed with clips from their adventures however these clips had changed to clips from the new series. These clips are literally only on for two seconds at a time but he was just crying and shaking…it was all wrong. The original opening credits hadn’t changed for three series (since it started in 2010) however for someone like Toby changing something so familiar is a big deal where as you or I may not have even noticed!
We watched the introduction a few times to try and get him used to it and after a few times few he seemed to calm down. However this morning when he got up we took him downstairs and put one of his Octonauts DVD’s on as he’s not allowed an iPad in the middle of the night as we don’t want hm to associate getting up with being rewarded with an iPad. So we watch the same DVD until everyone else gets up (in hope that he gets bored and drops off – dropping off again isn’t looking likely this morning!) Anyway the (original) introduction on the DVD came on this morning and he started shaking and then tapping my face once he realised it was the ‘right’ as if to say yes…this is right. He then chilled out and stopped shaking. Changing something safe and familiar is challenging when you have autism in an ever-changing world. We have the same problem with iPad updates…thankfully i0s9 doesn’t look too different and the new features won’t really affect Toby!
So something as small as a thirty second title sequence matters when you have autism…change is tricky and sometimes it’s the littlest things that matter the most. I think we’ll leave the rest of season four for a while…I could be completely wrong but I think that was what was bothering last night/this morning…and we’ll try anything to get more sleep!
Anyway he’s managed to get his onsie and nappy off and is bouncing on the sofa naked…over and out!