Multiply disabled children are often sensitive sleepers and keep everyone awake.
Loes Oorschot (26) has a serious mental handicap, she cannot talk and has a cerebral visual impairment (CVI). She lives at home with her parents and was almost every night awake. But ever since she sleeps in a CloudCuddle, she hardly wakes up anymore. Her parents are over the moon. Sleep peacefully every night. What an unprecedented luxury! It had been a long time since they had last experienced it.
Mother Louise wants to share her story with the CloudCuddle with as many people as possible. She is also committed to convincing professionals and institutions of the added value of CloudCudddle. “My daughter Loes has had a difficult time. Last year she lived in an institution for a short time. That didn’t go well at all. It disrupted her to such an extent that a crisis situation was imminent. Loes returned home after two months, but the damage had already been done. She cried a lot and hard, sometimes banged her head against hard materials, threw stuff, and couldn’t sleep …. That was a fierce experience for herself, for my husband Kees and me and for her supervisors. The doctor then prescribed antipsychotics so that Loes would sleep better. But this didn’t really work. The nights remained restless.
On the basis of her changed behavior, a team was formed around Loes with the help of various agencies, which put a clear structure to her day with a great deal of calm, cleanliness, and regularity. Louise continues: “This gave some improvement. But it was a shaky balance. Periods of more rest and more relaxation alternated with periods of restlessness. Loes also lay awake many nights.”
Louise had heard of CloudCuddle before, but it had disappeared into the background over the past year. “I am surprised myself because I heard from several people that children with a low level of education and a lot of unrest can benefit from it. This year CloudCuddle came back into the picture, partly due to our fantastic family supporter Nathalie”.
“We were a little reluctant to use it. Loes was often awake again and came out of the bed regularly at night. She had been doing that for years, and now even more often than usual. She also cried a lot and was frightened and distraught. For the caregivers at night and for us as parents, this is almost impossible to do. The nights are long and exhausting!
Sleeping in a bed tent
Louise continues: “When the bed tent came in, we set it up immediately. We thought that Loes would never accept that we would ‘lock her up’ in a tent; because that’s how it felt to us. I was sure it would take a lot of patience and perseverance for us to let her sleep in a bed tent from now on after 26 years in an ordinary bed”.
“With fear in our hearts, we have put it to the test. We agreed that we would leave one side of the tent open so that she could get out. But what happened? Loes lay down in the CloudCuddle without protest! We had not expected that at all. She slept very well on the first night. She didn’t get out of bed. We thought: this must be a coincidence. The second night an accompanying lady lay down next to her and completely zipped up the bed tent. The attendant didn’t turn a blind eye. But Loes slept like an ox!
“We could hardly believe it. We were so very happy. We didn’t expect such a relatively small change to have such a big effect. Anyway, we were still a bit sceptical. At first we wanted to be sure that it would stay that way. And what is the case? We are now two months on and Loes is still asleep as never before”.
“I keep wondering that Loes is not protesting. In the first weeks she slept around the clock. She had a lot of sleep to catch up on. Loes probably feels safe and secure in the CloudCuddle. Whatever the case, I give this tool to any parent who has trouble keeping a child in bed”.
Not out of bed
“If she wakes up, we go up to her, open the zip a little and reassure her. She has absolutely no need to get out of bed. We talk and sing softly in front of her and then Loes sleeps on again. And so do we! If only we had had this 22 years earlier” sighs Louise. “That would have saved us all a lot of stress and given us a lot of sleep.
Now that Loes sleeps better, she is also doing better during the day. Louise: “Very slowly she regains confidence in her surroundings and becomes our sweet, cheerful and relaxed Loes again. This allows us as parents to relax a bit more. The CloudCuddle has really made life more beautiful and bearable for us again after a very intense time in which we saw no way out. Loes was almost admitted to the crisis shelter. We don’t want to think about what would have become of her. We are now thinking about phasing out antipsychotics. We dare to do that because of the good night’s sleep in the CloudCuddle”.
Louise does not fully understand that the CloudCuddle is not reimbursed by the healthcare insurers. “A much more expensive bedbox will be reimbursed, but this device will not. I find that strange. Our application for reimbursement has already been rejected twice. But I am going to file an objection. For us, the bed box is definitely a solution. And I can imagine that this also applies to other families.