If you’ve been visiting me here for a while you’ll know that Toby (like most autistic children) is not a good sleeper and that this year in particular things have been worse than ever. So, over the school half term break we made some changes to our sleeping arrangements.

Before…

After…

I’ve not really gone into detail before about what we’ve been dealing with at night, but it’s become usual for Toby to have a major meltdown in the run up to bedtime and then several more during the night. They start with crying and build to screaming, jumping and flinging, hand-biting and raging around the house for an hour or so during which time he wakes everyone up and makes Amy cry. He then goes into an exhausted sleep before waking around 3 hours later for a repeat performance.

The stress of not understanding the cause of his anxiety, not being able to calm him or keep him quiet, the worry about Amy’s lack of sleep and coping ourselves with just 3-5 hours of sleep have brought both H and I close to breaking point. Some nights I’ve even plonked Toby in the car at 3am and driven around just to get him out of the house and to try and break the mood. Driving around for half an hour or so does help calm him, but it’s obviously a last resort and I don’t feel particularly safe driving when I’m so tired, so we’ve been trying to find an alternative.

Since he was tiny I’ve always settled Toby into his own bed at the start of the night, although it has been an increasing battle to get him in there. Sticking with that routine has now become impossible and guaranteed to end in meltdown and as soon as Toby wakes in the night he always comes to find one of us anyway – he’s either come into my bed or gone downstairs to H (who for the last 4 years or so has slept on a mattress in the living room – an arrangement that used to give one of us a restful night while the other one had Toby).  So a week or so ago I ignored professional advice about continuing to get him to sleep in his own room and let him start off the night with me in my bed.

I’m glad that I’ve taken the flexible route instead of sticking rigidly to what others advised, because going to sleep with me in my bed does seem to have helped him. Sometimes in the night he’s rolled over semi-awake and reached out a hand to check I’m still there. It seems that having either H or me close by is a source of comfort for him and is helping him deal with his night-time anxiety and I can only draw the conclusion that his distress, anxiety, meltdowns and night-time obsessions are, at least in part, due to fear of sleeping alone.

Anyway, with this in mind we’ve decided to get rid of the single bed in Toby’s room and replace it with a double bed. We’ve also got H a sofa bed for downstairs, so there’s now a choice of 3 proper double beds. It might continue to be a case of musical beds at night but at least it means that there are plenty of options and if Toby stays mostly calm (even if he’s wide awake for half of the night) everything will feel a little more positive here and hopefully somewhere down the line we’ll all get back into our own rooms and have some decent sleep!

At last I feel that we’re regaining some kind of even footing after 5 months of very shaky ground. Somewhere we can rest a while, gather our reserves of energy and move on from with a purpose. I suppose in short I feel ready now for the next bit of our journey with Toby instead of just being swept along against my will!