Why won’t she sleep?

In the early days pre-diagnosis the idea of our daughter Trinity sleeping before midnight seemed like an impossible dream!

If I’m totally honest, those days are a living nightmare. The evenings spent in her room bouncing her and spinning her from side to side until my arms felt dead; then Dad’s turn came and rocking her until his arms were about to separate from his body! Yet still Trinity’s little eyes were wide open! You dare not even stop moving for a moment, even if you were beyond exhausted as this would often trigger a meltdown!

The best thing we ever bought around that time was an IKEA egg chair, we progressed from at least not having to bear her full weight for hours on end!

Trinity would sit in the egg chair whilst Mummy and Daddy span her around, (yes our arms still got to the point of feeling detached from our bodies) however stopping the activity was still an issue.

So to prevent a potential issue and help our play finish on a positive note, we decided to introduce a number of spins left until it’s time to stop, usually saying something along the lines of, “Ten more spins, then stop!” Sometimes this would work and sometimes it would not! It usually didn’t take long to realise which way it was going to go!

Trinity cannot speak she is non-verbal, but has good verbal behaviour what I mean by this is, she is able to make us aware of whether or not she thinks it’s a good time to stop an activity, by using non-verbal communication like, grabbing our hands and leading us towards an activity object or place she wants to be.

The front or back door for example is often frequented by Trinity when avoiding the bedtime routine! Trinity takes her shoes, boots and trainers off the shoe rack and either hands them to us; or attempts to put them on herself. If these non-verbal communications are either ignored; or if Trinity is told she has to wait (even if it’s simply so we can get ourselves ready to go out) this can lead to a meltdown! At bedtime of course getting ready and going out isn’t appropriate and to interrupt a meltdown in this case, we will try running a bath for her sometimes lighting a fragrant candle in the bathroom, (confession the candle is more for me than her to prevent me from going into fight or flight mode, I find it calming) Trinity loves fizzing bath bombs they hold her attention and give her visual/tactile sensory feedback.

Sometimes even after the bath and music from Frozen 2 in the background Trinity can still go back into a cycle of anxiety when bath time ends, she bangs her feet on the ground, like a little stubborn Welsh Mountain Pony! She also will stub her toes on the ground, throwing herself around into furniture and onto the floor! Yes we did buy crash mats for her bedroom and a giant bean bag, for fun and to help keep Trinity safe in the home environment!

Trinity is very clever and seemed to recognise this same old routine, she got wise to it quickly. I can imagine her thoughts might have gone something like this, ‘Mummy and Daddy spin me, say ten more, they make me stop then want me to go to bed!’ It wasn’t long before Trinity increased negative and unwanted behaviours possibly to avoid either the end of an activity or the next demand of getting into bed!