An Update On Judith And Rose’s Sleep Story

18 December 2020

Judith tells Part 2 of Rose’s story on their journey to a good night’s sleep.

An Update On Judith And Rose’s Sleep Story

18 December 2020

Judith tells Part 2 of Rose’s story on their journey to a good night’s sleep.

rose in the sunshine

Earlier this year Judith got in touch to tell us how our Sleep Service had given her the advice and confidence she needed to tackle her daughter’s sleep problems.

Judith and her daughter Rose had made great progress in overcoming some of their challenges and were continuing on their journey to a good night’s sleep. Judith promised to get in touch again when they reached the point of Rose being able to fall asleep on her own so we were delighted when Judith sent us ‘part 2’ of their story.

Judith and Rose – Part 2

“I am really happy to have the opportunity to write Part 2 of Rose’s story. A little part of me is a bit worried that in doing so I will jinx things, but I have spoken gently to that part and reassured it that sharing is good!

So, where were we? Well, Rose was still needing us to help her get to sleep – during the year we had progressed from sitting with a hand on her tummy, edging inch by inch out of the room and into our bedroom, and had reached the point where she didn’t need to see us from her bed any more.

I had talked through with Pattie, our Sleep Practitioner, how we might make the gradual progression from being in our bedroom whilst Rose went to sleep, to tucking her in and going downstairs. We had talked about Rose perhaps reaching a point when she could listen to something as she went to sleep – a CD of music played by us (we are both musicians and she grew up hearing us playing); or perhaps we could make a recording of her dad reading The Wind in the Willows (according to Rose I’m rubbish at voices, so Dad gets to do the bedtime stories!).

Back in January 2020, about 8 months on from my first conversation with Pattie, we brought up the idea of the CDs. Rose got rather agitated and tearful, saying she wasn’t ready yet, and that she would know when she was ready. Rose does know herself pretty well, and so we made the judgement that we were going to stay with things as they were.

Lockdown

Then lockdown happened. Fortunately, the routine was well embedded and things continued as they were, although my husband Nick and I decided that we would stop taking the sleep process in turns, as Rose was getting into the habit of being a bit chatty with her dad as he sat in our bedroom.

So all through the lockdown months, I sat at the end of our bed, by now able to read a book – previously the turning of pages had disturbed Rose – so I worked my way through most of the Number 1 Ladies’ Detective Agency series, and a couple of books on Mindfulness!

Now that I was well outside Rose’s room, it was harder to tell when she was actually asleep, so I generally waited 45 minutes to an hour, just to be sure. At some point during that time I was able to make the shift from sitting in a chair at the end of my bed to actually sitting up on my bed – this was significant as it was physically and psychologically further away from Rose, and it meant that if I was really tired, I was able to lie down.

A holiday breakthrough

In August, we went on holiday to Wales. Rose knows that holiday house well – her bedroom there is in the basement, and we sleep two floors away, with the ground floor in between. She loves her room there, as it is close to the river and she says it feels really safe and womb-like.

One night, she just couldn’t seem to switch off – I was still sitting in the corridor outside her room at 11.20pm, just under two hours after her light went out. At that point I asked her if she wanted me to turn out the corridor light, because I felt it wasn’t helping her, and I also asked if she wanted me to go. She said yes to both questions. I went up to my room wondering what on earth was going to happen. I lay there, my brain going into overdrive, constantly expecting her to appear. She didn’t, and from that moment on, I have tucked her in and simply left the room.

Yes, really. From one day to the next, totally out of the blue. We have asked Rose what changed for her that night, and she said she had grown up and knew she was ready, and it was like camping for her and her teddy Freddy, together in the dark in her lovely bedroom by the river.

I wondered if there would be a wobble when she got home, or just before she went back to school, but it didn’t happen. She has a very firm routine, almost ritual, that helps reinforce her sense of safety – she likes to say and do the same things in progression, asking what Dad and I are going to do before we go to bed, and I do a short mindfulness meditation with her before I tuck her in.

We celebrated the milestone with a surprise picnic afternoon tea during our favourite walk, with her favourite cake and decaffeinated tea in a thermos.

Where we are now

It is wonderful for Rose, and for Nick and me too. My health was beginning to suffer a little from not being able to switch off in the evenings – I had developed serious frequent mouth ulcers and my dentist referred me to a specialist, who confirmed my suspicion that they were connected with pushing my own sleep process too late into the evening. Now I am back into my natural sleep pattern, and it feels like such a luxury. Also, although Nick and I accepted that sharing our evenings wasn’t possible for the time being, it is so lovely to have a bit of time to myself, then to join Nick by the fire for a chat or a non-competitive game of Scrabble before we go to bed.

As I said in Part 1, Rose hasn’t been able to go out in the evening with us since the sleep issues took hold, and we know that staying with the routine is crucial. We hope that some day she can start to do things in the early evening with us, or perhaps go to a local charity’s youth club, but it is worth the wait. Rose’s babysitter hasn’t put her to bed since the first lockdown began, and that will be another milestone – someone other than us doing the routine after so many months of it just being Mum and Dad.

But whilst counting our blessings, we take none of it for granted: we know that another unexpected anxiety or challenge might affect things again – however Rose’s paediatrician thinks that now that she has regained the capacity to get herself to sleep, it is likely to stay with her. At least now we know we have come through it before, which gives us confidence, and we know that the Cerebra Sleep Service website is still there, even if Rose has got too old for practitioner support (she turns 16 in January). We are also aware that Rose’s being effectively an only child (her half-brothers are in their 30s) made this whole journey easier. Had there been other children to take into account, supporting Rose with getting to sleep might have been a whole lot harder, and would have needed specific additional guidance from Pattie.

What has helped the most

So, what has helped the most? Sticking to the routine of the evening meal at pretty much the same time each day, and a lengthy wind-down time; adjusting lights-out time when needed, particularly according to season – Rose definitely needs to go to bed half an hour later in the summer, with an adjustment required again in the autumn; accepting that evening activities are out for now; being willing to stay with the support process for as long as it takes; trusting that Rose knew herself well enough to make the judgement about when she was ready to let go of the support. But above all, having Pattie there ‘in the wings’, and knowing that we could turn to her if necessary. It was her presence that enabled me to stay calm and to trust in the process, however long it took.

Our school nurse and paediatrician, who had both been previously unaware of the Cerebra Sleep Service, have now told other families about the website and support available, and we are delighted to consider ourselves unofficial ambassadors for this service that has helped us through this experience. Thank you, Pattie and the Cerebra Sleep Service!”.

Find out how our Sleep Service can help you and how you can get in touch with us.

Silent Nights

All children experience sleep difficulties at some point, whether it’s refusing to go to bed, having difficulty going to sleep or not wanting to sleep alone. However, while all children can have some issues with sleep, for children with neurodevelopmental conditions sleep difficulties are much more common and more persistent. This has a long-term impact on the wellbeing, not only of the child, but the whole family. Our Sleep Support is playing a crucial role in helping many of these families through their daily challenges by ensuring they get the rest they desperately need. This year if you’re able to give the gift of just one hour of sleep support, you’ll be helping a child and their family to have a very happy Christmas.

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