“Our fifteen year old daughter, Rose, has an underdeveloped cerebellum. This affects her muscle coordination, which in turn has an impact on her balance, coordination, walking, speech, and learning.
With the guidance of therapists, we have had to teach her every movement, every sound, and that work and effort continues today. She can now walk independently in some environments, and her speech has improved to the extent that she can generally be understood. We have all struggled with feeling that we don’t fit in the ‘mainstream’ community, and socialising has been very hard at times.
It has been a long and hard journey for us all, and we have had to prioritise Rose’s development. She has been going to a brilliant special school since 2016 – she loves being there and gets fantastic support. She belongs there and feels valued, and so do we.
During the summer holidays of 2018 Rose became very anxious about getting to sleep and could get extremely upset. At its worst, it took hours for her to get to sleep. She settled more or less back to normal after she went back to school, but we had to remain sitting in our bedroom, opposite her room, as she went to sleep.
From the start of 2019 we thought we were back to normal, being able to leave her to go to sleep without sitting in our bedroom. But two weeks before a school residential in March, after a very late night when we had had a concert in our house, Rose needed me to stay with her to get to sleep, and her anxiety continued. My husband took over after a few nights, as I was getting exhausted, and had to sit with his hand on Rose’s tummy till she slept. After a period of time, he was able to move towards the doorway, but it was clear that this was going to be a long slow process and we were distraught that Rose seemed to have lost the capacity to get to sleep on her own.
She continued to be very anxious and talk a lot at bedtime about feeling scared. Obviously the residential had triggered her anxiety even though she was looking forward to it, but she also developed fears about her future life and growing up.
How the Sleep Service helped
A friend told me about the Cerebra Sleep Service. I got in touch and, after completing some forms, we were allocated a Sleep Practitioner.
The first thing that really helped was the website information about adjusting sleep times (delaying Rose’s sleep time helped enormously and had an immediate impact) and having a long wind-down time between supper and bedtime (Rose responded really well to this).
Filling in the sleep diary was helpful as it focussed our minds and encouraged us to prioritise a routine and notice the effects of fluctuations in the routine. Keeping a record of how long it took her to get to sleep, and putting that in the context of the rest of her evening/day, was also really useful.
Talking to Pattie, our Sleep Practitioner, was brilliant. She looked through the diary and reassured us that we were taking the right actions and following the website advice in the right way. She helped us to tweak lights out time, kept me calm and gave me courage to follow my own instincts. The fact that she didn’t tell us off for sitting outside our daughter’s room was so reassuring, and she has helped us talk through the future progression of moving our chair further away and helping her gradually get back to getting herself to sleep. When we were going away in our caravan for a family wedding, which I was really nervous about as it might upset Rose’s routine, Pattie was able to talk this through with us and help me work out a realistic strategy.
Where we are now
As mentioned above, adjusting bedtime and bringing in wind-down time have made a big difference. I feel more confident about adjusting things as required, and having Pattie was like having a calm, supportive, benign friend in my mind at bedtime, keeping me on the straight and narrow (as Rose would put it!).
In terms of Rose getting closer to getting herself to sleep, I am now able to sit well out of Rose’s line of vision, in our bedroom, and Rose is able to cope with not being able to see me. It took longer for her to let go of seeing my husband’s foot, but now he too is positioned well into our bedroom when it’s his turn to help Rose get to sleep.
She continues to love wind-down time, and plays her harp, or reads, or plays with her sticker-books or writes in her notebook during this time. She has even brought in a mindfulness meditation with me as part of her wind-down!
It is now about 11 months since we first spoke to Pattie. We are still on the journey, and perhaps we can come back to this story when we have got to the point of Rose getting herself to sleep completely on her own – Part 2, as it were. For now we feel calmer and more confident, thanks to having been able to talk everything through with Pattie and follow her guidance. Rose is much calmer but when she is anxious, we are able to reassure her. The main thing, though, is that I still feel the effects of Pattie’s support even though we haven’t spoken for months – I feel like I know what to do, and that affects how I respond and gives Rose reassurance.
To be honest, without Pattie and the Sleep Service, I think things could have got very fraught and we wouldn’t have made the progress we have made. I hope our story gives hope to other parents and carers”.