7pm – bedtime for Teddy.
7:15pm – Toby lets himself in to the garden and goes out without socks of shoes and gets very muddy (just as I go upstairs to get his pj’s!)
7:16pm – bath time.
7:27pm – pj’s on and back downstairs.
7:28pm – make Toby’s bedtime drink (blackcurrent juice and melatonin) Toby finds it extremely difficult to switch off and so takes medication every night to help him go to sleep.
7:29pm – Toby has his drink – it usually takes about 20mins to kick in.
7:30pm – snuggles and The Octonauts and the Amazon Adventure for the 10 000th time and a quick FaceTime call to Nana and Grandad.
7:45pm – upstairs with Daddy, teeth brushed and in to bed.
Thankfully no tears and get ups tonight – must have been the slightly later bedtime!
23:25pm – bit of noise from Toby’s room.
23:47pm – sobbing from Toby’s room, I go in, pray for peace for him and get in to bed to give him a cuddle. He then starts crying hysterically. It’s pitch black (thanks to his blackout blinds) so I can’t see if he’s properly awake or not. He grabs me around the neck and just cries.
23:50pm – daddy brings a little drink in to try and distract him as he’s still hysterical. Teddy stirs a little. I try and assess the situation – Is he in pain? Has he filled his nappy? Has he had a bad dream? Is he recalling something distressing from the day? It’s really hard as he’s completely non-verbal and so can not communicate what the issue is. I pray under my breath…God please bring your peace.
00:00 – Toby starts to settle but still has random outbursts of tears, he manges to spill his drink all over me and starts diving about the bed…trouble is once he’s awake…he’s awake as he struggles to switch off again even with melatonin.
00:12 – starts sobbing again and he’s waking Teddy up…he then starts to get aggressive and starts kicking me in the neck. I get out of his bed and Daddy comes in to restrain him.
00:15 – we all (along with Toby’s two blankets) end up in our bed. Toby chews his blankets and dives around a bit…we try and ignore him but he’s not going back to sleep.
1:25 – I give in, put Joel’s big dressing gown on and take him (and his blankets) downstairs. Joel has a full day of teaching ahead of him so needs some sleep! We put The Octonauts and the Amazon Adventure on (again!) I’m sure I know it word perfect by now. We lay on the sofa – Toby dives about and chews his blankets. The DVD is still part way through from where we left it before bed.
I can’t go back to sleep now…he’s not safe to leave unattended – he could try and let himself out of the house, or he could climb over the stairgate in to the kitchen and climb up on the sides to get food out of the kitchen cupboard, or he could take his nappy off and wee and poo everywhere. I rest my eyes.
2:27 – DVD is finished and needs restarting.
2:33 – he rolls the rug up and wraps it around himself – he’s getting tired now.
2:38 – maybe not…he tires to climb over the gate in to the kitchen which usually means that he’s hungry. I make him a slice of plain toast. He doesn’t want toast.
2:56 – he eventually eats his toast.
3:16 – he’s bouncing about – def overtired now.
3:30 – tears again…not really sure why.
3:46 – DVD needs restarting (again!)
3:59 – he comes over and smiles and kisses my face – are you still not tired Toby?
4:04 – he fills his nappy – any chance of a sleep now?!
I’m not writing this for sympathy – I’m documenting our journey because I want to look back in years to come see how far he’s come (and it gives a me something to do when he’s up in the middle of the night!) I also want people who are facing similar challenges to know that they are not alone. I also want people to see some of the issues that families with additional needs children face so that they can help, support and pray for them. If you do pray, we would really appreciate some prayers for sleep at the moment!
There are nights (believe it or not!) when he does sleep through! he did last night however Joel had to cuddle him for an hour or so before he settled as he was so emotional…he’s pretty unpredictable. However we’ve had several bad nights over the past week or so. He finds transition times tricky and little things make a big difference to Toby. We see this as a bit of a pattern – start and end of holidays/term time.
He has loved going back to school. He stands at the door on a morning with his bag waiting for his taxi and claps and flaps all of the way to school. School have also said that he seems very happy to be back and has settled straight back in to the routine of school life. Even though he’s in the same class with the same teachers sad last year, they have had some new children starting, he has a new taxi driver and escort and his classroom was painted over the holidays – all of these things matter to Toby. As he doesn’t speak, we can’t chat about these changes or his worries so what usually happens is that he just becomes very emotional and distressed. I know I would be too if I couldn’t voice my concerns! It’s usually on an evening when he’s ‘still’ that he gets upset – in bed etc.
Toby plays things over and over again in his head. You often see him giggling and flapping for no particular reason and it’s a similar to a response to something that he has watched or played on his iPad. When he is on his iPad, he often rewinds things and watches the same thing over and over again and usually it’s something that you or I wouldn’t find funny! For example, in the Octonauts and the Amazon Adventure, Kwazi the cat meets his grandad and there’s a shot where you see both cats together on screen for the first time (which he thinks is hilarious!) he also loves the end of the teletubies where they say bye-bye and jump in to their house, he also watches theme tunes and credits over and over again.
In the same way, I think he replays things that aren’t so good over again in his head as in the same way he giggles randomly, he also cries randomly too.
Little things matter when you have autism…Toby’s particular about a lot of things…what he eats and where he eats it….where you go and the route you take (cries if you go a different way somewhere) or if you do something in a different order to how he expects. That is the way God has made him and so we pray for grace – grace for him to cope with changes and grace for us to cope with his behaviour!
So having new children in your class which was the same all of last year is challenging, as is having a new taxi driver and sitting in a new seat in the car! And I’m sure that there will be other changes too that I’m not aware of which wouldn’t bother you or I but matter to children with asd.
Anyway, it’s 4:20 and he’s still awake…he’s snuggling in so hopefully he might drop off for an hour or so before school!
*update!* 4:49am – he’s finally asleep! However I can’t move and the Octonauts is still playing…now to grab an hour! Goodnight!
Ps – apologies on spelling and grammar – it’s not my strong point and I’d only had two hours sleep!