We had to wake up Elodie this morning, as was expected. She wasn’t that eager to wake up. We let her sleep as long as possible and then rushed to NoTube. It’s only a 7-minute walk, and luckily we get breakfast there.
During breakfast, we had to put white cotton pads in our mouth, so we could feel and understand how our children feel when they are eating. Their mouth area is very sensitive, getting to know how your child feels is a big part to understanding your child’s eating disorder and how to guide them. NoTube does an excellent job at this. It’s such a difference from local medics and social workers saying that your child is manipulative, that you as a parent should toughen up, or worse are to blame for the eating disorder.
During the medical rounds we had to align our new objectives. Luckily everybody understood where we were coming from, and we could agree on these. Our goal was for Elodie to experience and try new foods in a stress-free environment, and for us to let go more and believe in her capabilities.
Normal day care wasn’t an option for us because the children only eat at certain time slots and mainly eat bread and fruit, these are things Elodie doesn’t eat. At a p-4 line weight (9 kg at 2 years old), we didn’t want to take risks, she would get sick more often and that would slow her eating development.
Here at NoTube there are all the mealtimes, but they are also being surrounded by food in a sensory way which really helps her to get more interested in food. It’s a big difference from last year already, where there was no interest in food.
Dr. Scheer came by today again it was very healing to see and talk to him. Elodie calls him ‘opa’, grandad, which is quite funny! He is one of the top paediatricians together with his wife Marguerite who is also a paediatrician, and Elodie calls them grandparents. She doesn’t like doctors, and grandparents makes her feel more at ease. Luckily they are fine with that. Next to that the team here doesn’t act like the typical doctor or medic, they don’t wear white clothing, so children feel at ease. They are more involved, personal and friendly which creates a pleasant atmosphere where you don’t feel judged.
Elodie actually ate a bit of white rice today, it had extra flavour because it was made in bouillon. If she tries something new every day we would be very happy. We don’t expect the volume to skyrocket immediately, this will take more time. But just seeing her try new things is wonderful.
Today was still quite emotional, and I was exhausted, I slept again during Elodie’s nap and slept quite early at night. We are still trying to figure out Elodie’s new sleeping rhythm. It’s nice to have the parents groups and the play groups, where one parents is with the child in the sensory ‘parent child session’ where they do all sorts of things with food, while the other parent is getting more information about eating disorders in children or can ask and discuss their own journey and their child’s behaviour. It’s also a good way to get to know the other parents and to learn about the different eating problems families face.
There are also sessions for the mothers with a psychologist, where you can talk about your emotions and your trauma. The men also get group sessions where they can discuss their feelings and worries or more information. This all round help for everyone in the family is the biggest differentiator when comparing to other therapies in my opinion. And of course that they treat you with respect and don’t do parent blaming.
We started to get to know a few other families and their children. It feels good to be around people who understand you and have similar problems. Not many others understand our situation. This time we could encourage other families, who were still at rock bottom. Dr. Scheer said it was good to see me smile more this time. Last year I spent the entire eating school crying every day. Which is okay too, I wasn’t the only one, and everyone understands this.