Cathy and her family were all struggling with the impact of her son’s inability to settle at bedtime and his waking during the night.
Harry, aged 2, was diagnosed with Mosaic Down’s Syndrome a couple of weeks after birth, and, last year, was also diagnosed with Avoidant and Restrictive Food Intake Disorder (ARFID). As a result of his Down’s Syndrome, Harry has a speech delay and, although he is progressing well in all areas, he also has delays in all aspects of his learning and physical development. His mum told us: “He is also extremely stubborn and impulsive, traits that are sometimes said to go hand-in-hand with Down’s Syndrome!”
His ARFID makes mealtimes and socialising very difficult; the family can’t go for picnics, on days out or abroad as they must have access to the few foods that he is able to eat. His parents also have concerns about his nutritional intake, although so far the multi-vitamins he takes seem to be working well. His poor diet has also led to constipation.
Harry had always been a restless, active sleeper but had always slept well until he needed more space at night and moved into a single bed. Since then he didn’t seem to recognise that he needed to stay in it at night and bedtimes became a battle, with his dad needing to sit on the end of the bed until he fell asleep – otherwise as soon as he walked away, Harry would get up.
Over time, Harry then began waking at night and walking into his parents’ bedroom. Although they immediately led him back to bed without speaking or making eye contact, he got into the habit of doing this 3-4 times a night, every single night. His mum found it hard to get back to sleep afterwards, so she too was losing hours of sleep each night.
Harry has always been an early riser (usually 5.30am) but his mornings also began to get earlier and earlier, sometimes as early as 4.30am. This went on for about 8 months and the whole family were exhausted and irritable. Harry’s behaviour was becoming more difficult to manage too. On a weekend away Harry managed to get up in the night without anyone hearing. His parents found him sitting by the front door, having climbed a flight of stairs in the darkness. This prompted them to ask for help as they realised how dangerous his wandering could be.
Sleep Support from Cerebra
Harry’s mum explains what happened next: “We contacted Cerebra online and they posted us some forms to fill in. Even the forms made me feel like we were in good hands as they were so comprehensive. Keeping a sleep diary for 2 weeks was really hard work as it was just another thing to keep us awake at night. Once we had done this and sent the forms back, Patricia (one of Cerebra’s Sleep Practitioners) emailed us to introduce herself and arrange a telephone call. When she telephoned, she was very friendly and not judgemental at all and this was such a relief.
She made suggestions such as using visuals, using a stair gate on Harry’s bedroom door and then, if he called out, talking to him over the video monitor instead of rewarding him by going into his room. She also suggested trying a weighted blanket, sleeping bag or compression sheet instead of a duvet and using a sleep training clock. She sent over some useful reading and arranged a follow-up call to see how we were getting on. It was nice to feel listened to and that we weren’t on our own anymore”.
Sleep Practitioner Patricia explains that Harry’s main sleep issues were with settling, settling alone and waking in the night (getting out of bed): “After completing the questionnaire mum and dad have managed to progress things, they tried a sleeping bag and started the process of gradual withdrawal to get Harry to fall asleep by himself. He was waking in the night and going to the stair-gate and his parents would have to get up to tell him to go back to bed, meaning their sleep was very disturbed throughout the night. They had a video monitor so I suggested they try talking to him through there as the next step, so getting him to go back by himself”.
How things are now
Cathy explains that Harry now sleeps through the night and this has made life easier for the whole family: “It’s made such a huge difference to all of our moods during the day; we are happier, less irritable and have more energy to play with Harry and to tackle his trickier moments, which have considerably reduced! We look forward to getting in to bed at night with the knowledge that we will be able to enjoy a good sleep.
One of our favourite times of the day is ‘calming down time’ (or ‘calm time’ as Harry says). We have a scheduled time when the TV goes off and Harry can choose from a range of calming activities such as playdough, puzzles, stickers etc. The three of us often get into bed, cuddle up and do sticker books together, which is lovely. We also have our evenings back; once my husband has left Harry’s room, he goes to sleep quickly and we don’t hear from him again until the morning.
Harry is still prone to early starts; today he was up at 4.45am. We moved his bedtime by 15 minutes in the hope that this would positively impact the mornings and it did briefly but it hasn’t stuck. We have purchased a sleep clock today. As we have had so much success with visuals at bedtime, we are hopeful this will improve things. However, as we now sleep well at night, we feel more equipped to deal with these early starts”.
We understand that if you have one child that doesn’t sleep, the whole family suffers. Our range of sleep services will help your child – and everyone in your family – get a good night’s sleep.
*Names have been changed.