Nikki is a pretty good sleeper, according to her mother Christel Groenewegen. The only condition is that she can’t get out of bed herself. That’s why, when she became a little older, the toddler bed with wooden bars from the first years of her life was replaced by a larger version. But when Nikki became too tall for that too, a custom children’s bed from Atlas came into the house. “This bed with bed rails we had on loan. So when Nikki went to live in an institution at the beginning of this year at the age of 21, we had to hand it back,” Christel explains. The family then started looking for another solution for the two nights a week that Nikki sleeps at home. Because the purchase of her own bed box turned out to be rather pricey, Christel started looking for a good alternative.
Bed tent good alternative for bed box
“We went on vacation with the family several times with the Wigwam Foundation. That’s where I saw the CloudCuddle bed tent for the first time. That’s the beauty of these vacations: you meet other parents with a disabled child and over and over again you share tips and experiences,” Christel continues. “So when we were looking for a solution for sleeping at home, I thought back to the CloudCuddle. I had also read about it on the internet but because I saw one at Wigwam, the decision was quickly made. We first requested a trial period and tried out the bed tent at home for a few nights.”
“I explained to Nikki in detail beforehand that her wooden bed would go and a bed tent would come in its place. We went to look at a CloudCuddle together and I showed her how she would lie in it and that she would be able to look outside through the mesh. Nikki has classic autism and so changes are difficult for her. So we were very curious about her reaction. And although she doesn’t talk herself, I have the impression that she understands almost everything we tell her.”
The test quickly proved a success. Nikki crawled into the bed tent without any problems and slept well in it from the first night. The CloudCuddle is placed in her own room, simply over a standard single bed. “Nikki does not indicate that she wants to get out when she is in the bed tent. She behaves calmly and seems to really like the seclusion of the tent and the low-stimulus environment it creates,” her mother explains.
Because of the combination of classic autism and an intellectual disability, Nikki does not speak. However, she has learned from her mother to use pictograms according to the PECS method to indicate what she wants: eating, drinking, sleeping, going to the toilet. She only walks when she has a clear goal to get somewhere. Going to bed is quite a ritual. “We go through a whole process before going to bed. And don’t worry if we forget a step: Nikki gets upset. Then I think back: which step did I skip? And then I do the whole ritual again until it’s right for her.”
Every time Nikki comes home to sleep, Christel checks the air pressure in the frame of the CloudCuddle: “I know that the bed tent is not intended for permanent use. Nikki sleeps in it two nights a week so we leave the CloudCuddle on her bed. It is then safe to regularly check the amount of air in the tubes. On the weekends, Nikki likes to sleep in. After an early morning change and breakfast in bed, she’ll doze off for a while with some music playing. That’s her chill moment. She really likes it in the bed tent.”
In the past, Christel’s family went on vacation to adapted places, such as those run by the Wigwam Foundation, where they have the same bed box that Nikki had at home until recently. Or they dragged a “camp bed XL” to their vacation destination. “That’s a lead heavy thing that takes up a lot of space. We had to arrange a trailer to take it with us. Moreover, it often didn’t fit in the bedroom of the chosen vacation home. Quite a difference with the CloudCuddle”, says Christel. Nikki’s mother is looking forward to a vacation with the whole family. “My daughter is doing well. She’s in a flow as far as her behavior is concerned. I think it would be great for the four of us to go on vacation in an easy way and to be able to put Nikki to sleep almost anywhere.” (Christel has another seventeen-year-old son at home, Kai.)
Purchasing a CloudCuddle is quite a bit of money. How did the family arrange this? “Nikki receives a Wajong benefit now that she’s an adult. Since she turned eighteen, my husband Aad and I have been managing her finances as administrators. For any expenditure over 1,500 euros you have to ask the judge for permission. I understand that very well, because you don’t want it to be abused. Fortunately, the price of a CloudCuddle is below this amount.”
Tips for Parents
Does Christel have any tips for other parents? “No, not really. I find the CloudCuddle very easy to set up and practical to use. I only have some difficulty with changing the inner sheet. Oh, wait, still a piece of advice: I’ve received the tip from other parents of children who ‘smear’ with feces to use pajamas with a zipper on the back. Saves a lot of work changing my daughter.”
Anyway, Christel, her husband Aad and her son Kai have more time and space to do other things now that Nikki is living in a care facility. “It’s an intensive combination: working as a purser, a husband with his own business and a son with an eye condition. But over the past 21 years, I’ve become very adept at organizing care and arranging aids and other things.” Christel sounds upbeat and powerful during the interview. A mother to respect. Just like for the inventor of the CloudCuddle, Christel lets us know. And that, in turn, is what the CloudCuddle team likes to hear.
* CloudCuddle’s explanation of the above story: the CloudCuddle is designed for occasional use, to sleep safely outdoors without the use of an adapted bed or bed box. Think of staying with family and friends, arranging respite care, an extra day in the guest house, a hospitalization or for vacations. The life span of the bed tent is based on this. Because many children sleep better in a CloudCuddle than ever before, there are parents who use the bed tent all days at home. They know that the parts of the CloudCuddle may then wear out sooner and need to be replaced.