Staying in an adapted bed with your big brother: how fun is that?

Daphne and her husband had been looking for a long time for a mobile adapted bed to go on vacation with the whole family. They tried out the CloudCuddle at home and were instantly “sold. “Jelle stayed in the room with his big brother for the first time in his life and that is unprecedented,” Daphne explains. It is the first step towards a self-chosen vacation home.

Daphne van Velzen and her husband Michiel have two sons: Menno (9) and Jelle (6). They normally like to go on vacation to Scandinavia. When Jelle was still a baby, his parents set up a small tent in the bedroom of the vacation home during the vacations. When he grew up, they bought a bigger tent for Jelle. But this one was not sturdy enough. Jelle unintentionally broke the tent or crawled under the tent cloth. “At night we were working with tape and needle and thread. All four of us slept badly. It became clear that this was not the right way to spend our vacations,” says Daphne.

Vacation or lodging in adapted bed

The family decided to adapt their vacation destination to fit their circumstances. “The four of us went to the Ronald McDonald Children`s Valley Foundation several times. There they have adapted beds, just like at home. Jelle has been sleeping in a bed box since he was four years old. We chose one with a roof and stars on the inside. Jelle feels safe and secure there.” Yet they wanted to have more freedom of choice: to be able to go on vacation with the family to a vacation address of their own choosing. Or just let Jelle stay somewhere else for a while, just like other children. That is not so easy because of his background.

Quickly overexcited by autism

Jelle has autism and, due to a medical cause, also epilepsy and problems with nutrition. “He has a considerable stimulus processing disorder. Jelle also has a MIC-KEY button so he gets enough nutrients through a tube, his glucose values don`t fluctuate too much and he gets his medication on time. Jelle sits at the table with us every day, we offer him food and drinks. Sometimes he eats a piece of bread or drinks a sip. But most of the time he is so over-stimulated that he refrains from eating”, says Jelle`s mother.

No unequivocal medical cause

An underlying cause for Jelle`s medical condition is not known. There are suspicions of a syndrome and genetic abnormalities have been found, but an unequivocal explanation for his medical condition is not available. “From birth, Jelle reacted differently from his older brother Menno. As a baby he was not alert, would regularly sink. The midwife and the maternity nurse did not trust it. Jelle was treated at a very young age for cardiac arrhythmia. They are now under control. But every time something comes up in terms of health.”

No adapted bed by nurse

For the care of Jelle, the family employs two nurses via the pgb. They relieve the parents. Jelle attends a cluster school four mornings a week. That is the maximum number of hours he can handle. Jelle sometimes comes to the home of one of the nurses. That goes well. “We would also like to have him stay with her sometimes. I know she is willing to do that. But then again, she doesn`t have an adapted bed at home.”

Staying in an adapted bed for the first time

During one of the vacations at Ronald McDonald Kindervallei, Daphne struck up a conversation with other parents with a child with similar issues. “They told us enthusiastically about their experiences with CloudCuddle. We had never heard of it. Not even through the nursing daycare or the therapeutic toddler group of the rehabilitation center where Jelle goes. We became curious and went to have a look at the site anyway. On that basis we requested a trial weekend and that went very well. We put up the bed tent in Menno`s room. So Jelle could sleep in his big brother`s room for the first time in his life. That was a great success. For our family, such `little` moments are very valuable.”

Difficulty sleeping in a normal bed

As a baby, Jelle already had trouble sleeping. The transition from crib to toddler bed was an insurmountable bump. “Jelle cried, screamed, got angry. We did not really understand why. We did not know then that he had autism. He felt very unsafe and kept turning the light switches on and off, opened and closed the shutters, pulled the curtains: looked for anything that stimulated him. Jelle didn`t sleep anymore, we didn`t sleep anymore. My husband and I slept next to him for months on end. On a mattress on the floor, to keep our son in bed. We discussed the situation with an occupational therapist and came to the conclusion that things could not go on like this. The proportions became skewed. Jelle could not stand being regularly hugged and touched by us. The physical closeness was too much for him”, Daphne explains. A bed box was the solution. Since then, Jelle sleeps quite well. His parents do not have long confrontations with Jelle at night anymore. They can now keep the necessary distance.

WMO application adapted bed for vacations

“We are now planning to purchase a CloudCuddle,” says Daphne. “The WMO application has been submitted. We have to wait and see whether the bed tent will be reimbursed. But if the application is rejected, we will pay for the CloudCuddle ourselves. You have to know that we have a lot of extra costs as a family. We have to make choices. But a CloudCuddle is at the top of the list. The bed tent is sturdy enough for Jelle. The defined space gives him a sense of security.
What I also like about the CloudCuddle is that it also looks attractive to siblings. Menno immediately crawled into it when we had a sample for testing. The only downside is that the bed tent looks a bit sterile. But then again, all that white is very relaxing. We are looking forward to going to a party with the whole family. That`s not possible now. And we`re also looking forward to more sleepovers for Jelle at his brother`s and – who knows – another vacation in Scandinavia in the future!”

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