Kimberly Verstraeten is a mother of three. Liam (5) is the middle one. He has Smith Magenis Syndrome, a genetic disorder. This manifests itself in muscle weakness, motor problems, scoliosis and developmental delays. Because of his condition, Liam does not produce melatonin – the hormone that makes people sleepy – so he does not get tired at night and hardly sleeps at all. He does produce melatonin during the day, however, so his day and night rhythms are severely disrupted.
Developmentally disabled child and poor sleep
Mother Kimberly: “For the first few years of his life, Liam slept from eight in the evening until 1:30 at night. After that he stayed awake. When he woke up at night he would call out to us, bang on doors, cry: anything to make contact. I would go over and stay with him until the next morning. During the day Liam was dead tired which caused behavioral problems. Because Liam couldn’t talk for a very long time and has a developmental delay, he has no sense of time.”
Center for sleep medicine
Fortunately, those ultra-short nights are a thing of the past, Liam’s mother continues: “A year and a half ago we went to Kempenhaeghe, a center for sleep medicine. Since then Liam has been on melatonin, which allows him to sleep through until about four, half past four in the morning. We don’t get him out of bed until six because we want him to get used to it. During the day, Liam takes beta blockers to help him stay awake.”
Freedom Restricting Measures
Despite the impact on her own sleep, Kimberly never wanted to take freedom restraining measures for her infant son. “I didn’t want to lock up my child. I’d rather curtail my own freedom,” she explains. Yet she began to think differently when she read on a forum the experiences of other parents who had purchased a CloudCuddle.
Safety and comfort
She explains, “I read the story of parents who hadn’t been on vacation for thirty years. And now they had spent three weeks in an apartment, thanks to a CloudCuddle. Their daughter had been just as calm at the vacation address as she was at home. They also talked about the sense of security and comfort that the bed tent provided for their child. Through these parents’ story, I suddenly saw a new perspective for the future. This mobile bed tent was something I wanted to try, too!”
Trying out a weekend
Through Stichting Vooruit, Kimberly was able to try out the CloudCuddle for a weekend for free. Her husband set up the tent. My son was immediately excited when he saw the tent on his bed. He really wanted to sleep in it. I found that very reassuring. This way I could get rid of the unpleasant feeling of ‘locking up my child’. He slept in it for three nights. The first night the alarm clock woke me up for the first time in six years. I slept through wonderfully and didn’t hear Liam. The other two nights, too.” Because it was a trial weekend, Kimberly returned the CloudCuddle on Monday.
Easy to wash
There was one less pleasant surprise waiting for her after the first night Liam had slept in the CloudCuddle. Kimberly: “We put a bodysuit on Liam at night over his pajamas, with a fastener at the back so he can’t get his hands into his diaper. Unfortunately, something had gone wrong there. With the result that his stool had ended up on the bed. Fortunately, the CloudCuddle is easy to wash and I did so immediately. I immediately thought: we’ll find something for that.” Kimberly and her husband are not easily fooled.
WMO application submitted
In the meantime Kimberly has submitted an application to the WMO because she wants to purchase a CloudCuddle herself: “But we’ll have to wait and see what the outcome will be. I understand that a CloudCuddle is not reimbursed as standard. The bed tent would give me back my own life and some peace and quiet, so I really hope it works out. Liam slept much better in it. It would be nice if he could stay with grandparents for a change too. That’s nice for them and it would also take the pressure off our family.”
Out with all of us
“My husband set up the CloudCuddle. That went very well. The bed tent is compact, easily washable and easy to carry around. I didn’t think beforehand that ‘restricting freedom of movement’ could also have advantages. The bed tent offers safety for Liam and it gives us the opportunity as a family to go away together. There is only one downside: my other children were quite jealous that they didn’t get to sleep in such a nice bed tent themselves.”
Developmentally delayed child and poor sleep
Does your child have a developmental delay and difficulty sleeping? Perhaps CloudCuddle’s mobile bed tent is a solution for your son or daughter. Read more about the possibility of a trial weekend, about renting a CloudCuddle or purchasing a mobile bed tent for your son or daughter. Questions? Contact customer service.