Grace's Safe Room
Emma and Mark Riddell, the parents of four year old Grace, have many reasons to be thankful that they recently had a safe room installed. Grace has Smith-Magenis Syndrome (SMS) a chromosomal condition that means she has an extremely high pain threshold and causes very disturbed sleep patterns. Most children with SMS also have developmental delay and moderate to severe learning difficulties. Grace’s condition reverses her sleep hormones, leaving her unable to sleep at night and exhausted during the day, when tiredness could cause serious injury.
Grace also suffers from sensory overload which, combined with her inevitable frustrations, causes serious bahavioural issues and outbursts. Until recently Emma and Mark had to take turns caring for Grace during the night. ‘When she wakes during the night she gets so frustrated that she can’t go back to sleep. She will scream like she is being tortured and head bang, bite her hands and hit herself. It’s horrendous,’ said Emma. ‘She couldn’t sleep in a normal cot as it was too hard,’ she went on, ‘so she used to sleep in a soft, mesh sided travel cot. But as she got bigger we realised we would have to sort something else.’
When Emma met the parents of a girl with a similar condition they told her of a padded room which they had installed. ‘We liked the idea, but our house isn’t really suitable and we wanted something we could take with us when we moved,’ said Emma. It was at an exhibition that they first saw a free standing safe room, effectively a room within a room and realised that could be the answer. Emma explained more: ‘when an OT visited after Grace had had a particularly bad night, she couldn’t believe the state she was in, with her head all covered in bruises. The OT could see that something had to be done and put things in motion. A specialist from Birmingham City Council came to carry out a home assessment and we ordered a safe room.’
David Payne, from SensoryPlus who designed and installed the safe room said: ‘the most rewarding aspect of our job is helping parents like Emma and Mark to solve problems. This isn’t to overlook the importance of the work done in schools or the many other establishments we operate in, but when you’re working with children and their parents in their own home it’s hard not to become attached to their cause. Meeting with Emma and hearing of her search to provide something appropriate for Grace’s bedroom was just such a case.’
Emma had a very clear vision of how the finished area would look and what specific aspects of Grace’s needs and behaviour it needed to address. It was equally important that the room was aesthetically pleasing. The resulting design was based on as using as much of the floor space as possible but still allowing for everyday tasks such as cleaning the room and windows, whilst ensuring that Grace was safe and content. ‘Our experience of designing large scale adventure play environments as well as safe rooms for challenging behaviour and secure establishments meant we were able to create a bespoke solution which matched Emma’s vision’, concluded David. ‘It was a project which gave everyone involved an immense sense of satisfaction.’
And what did Grace think of her new safe space? ‘She absolutely adores being in there,’ said Emma, ‘we tried to make the room as pretty as we could, with lots of twinkling fairy lights. She’s so happy in there and is generally a lot less frustrated’, she went on. ‘Grace can get overwhelmed by people so she can now retreat to her own safe space to relax and play quietly’. Grace’s bedtime routine is now a lot calmer. She goes to bed around seven o’clock and although she wakes several times throughout the night and is fully awake from 3.00am, she can get up and play with her toys, meaning Emma and Mark can get a better night’s sleep knowing that Grace is completely safe. ‘The room can be fully zipped’, explained Emma, ‘so she’s completely safe inside. She can’t get out and hurt herself, or fall down the stairs. I can’t exaggerate the difference it’s made to us. The safe room has been an absolute lifeline for all of us.’
You can find more details about Grace and the Smith-Magenis Syndrome Foundation on www.graceriddell.com