Spiros Chalos has Greek roots. That is why he and his family regularly go to the Hellenic Republic to visit family. With his ten-year-old son Philip, this is not a matter of course. Philip has Joubert’s syndrome, a very rare hereditary disorder. He has the developmental level of a two-year-old and, due to autism, is prone to over-stimulation. The CloudCuddle bed tent offers the family the opportunity to travel together after all.
Safe and secure
At home, Philip sleeps in a very spacious, height-adjustable 180 x 200 cm bed that he cannot crawl out of on his own. It is padded, i.e. lined with walls of soft material, so that Philip cannot hurt himself. In this bed box, he feels safe and secure. “A few years ago we moved to a house where Philip has his own bedroom with bathroom on the first floor. There he can retreat when he gets overexcited,” explains father Spiros.
Five years of experience with the travel tent
Despite the busy family life, Spiros wanted to take the whole family on a family visit to Greece. But how? For that reason, Spiros and his wife responded in 2017 to the call to test the first version of the CloudCuddle bed tent. They liked it so much from the start that they purchased one as soon as it came on the market. The family is thus among the users of the first hour, now almost five years ago. “The CloudCuddle is really Philips’ little tent,” his father explains. “He goes into it with a grin on his face. He feels safe there and when he is tired, he goes to bed by himself, just like at home.”
Handy bed tent
What does Spiros think of the CloudCuddle? “It’s a handy thing. The bed tent is inflated in no time and builds up quickly. Pretty easy to use. It took us a while to find out that the cover of the bed tent is machine washable. That was a revelation for us.” By way of explanation, the cover is easily removed from the frame and put back in here after washing. Spiros continues: “We find the bed tent ideal for vacations or to take to a sleepover. I would advise other parents to try out the CloudCuddle a few times before purchasing it. It is quite an expensive tool and by testing it you can be sure that the tool is also suitable for your child.”
The family has come a long way to get where they are today. From birth, Philip made many movements with his head; as if he was constantly looking for nourishment. At first, that was also the explanation of the nurses. Otherwise Philip behaved calmly and there was nothing unusual about him.
Tests with neurologist
“After a few weeks, my wife and I began to worry anyway,” Spiros explains. “Philip was not responding to loud noises and he never turned his eyes to us. We came to a neurologist via the pediatrician. Based on a series of tests and additional examinations, it was determined that my son had a “visual and auditory maturation delay. He was virtually blind and deaf at three months but this would gradually improve.”
With these findings, however, it had not yet become clear what was causing Philip’s limitations. Via an intermediate step, the parents ended up at the VU Medical Center. There, the clinical geneticist immediately recognized the symptoms as the rare hereditary disorder Joubert’s syndrome, a genetic defect in the cerebellum. The symptoms are different for each child. Philip cannot talk, is not potty trained and has the developmental level of a two-year-old. His autism also limits his abilities.
Delayed stimulus processing
Philip has two younger sisters aged five and three. They bring the necessary commotion in the family. Something Philip cannot always cope with. “By now we know from experience when it’s too much for my son. Then we escort him to his own room to get some rest. Philip’s processing of stimuli is delayed. For example: if we hear the sound of a leaf blower during a walk and we can’t get around it, Philip reacts by becoming very agitated twenty to thirty minutes later,” Spiros explains.
“It is quite difficult to understand each other,” Spiros confesses. “Slowly we learn to interpret Philip’s body language. Philip needs constant supervision and distraction. A caregiver comes to our house every day. My son attends special education, where attempts are made to get him to achieve learning goals such as potty training, putting on and taking off a coat himself, learning to communicate using gestures. Although Philip can walk, for safety reasons he goes to school in a wheelchair with adapted transport.”
Well prepared for travel
The family has travelled to Greece a few times in recent years for family visits and vacations. Good preparation is essential, however, as is choosing the quietest possible environment, as Philip is very sensitive to noise over-stimulation. “We had a pleasant vacation last summer, with three adults to three children,” Spiros explains. “The noises of the other children remained a problem for Philip, but at least with the CloudCuddle attached, the situation during sleep is almost like at home.”
Are you a parent of a child with a disability and would you also like to test the CloudCuddle for a weekend as an adapted travel bed? You can do so by requesting a trial weekend or renting a bed tent.