Eating and feeding disorder,  Infantile anorexia,  NoTube

Notube Eating school day 1

Today is the start of a journey that will hopefully change our lives. We are going to the NoTube eating school in Graz, Austria, the first time abroad with our little one. The first time away from home for a longer period.

We had to wake Elodie up at 8.00 which is really early for us. Normally she wakes up at 9.30 and we can’t complain because we are night owls ourselves. My husband already has a big sleep deficit due to long working hours as a strategy consultant. Luckily she woke up a happy camper, and we started the day.

While hubby was having Asian wok vegetables for breakfast, Elodie went to him for a few bites. So that was a good start of the day.

On our way to NoTube we gave her one Nutrini Creamy, as Elodie only eats larger amounts while on the move or playing. Mind you, she doesn’t eat by herself. I have to feed her with lots of distraction. This is necessary for her to not lose weight.

This morning and afternoon were about the introduction of the NoTube team, and for them to get to know Elodie and our struggles. We told them our situation, and that she only eats with lots of distraction. But we didn’t tell them exactly to which extent. We spend 3 hours in 2 sessions a day walking after her while she is playing and distracted outside. This is incredibly energy draining for me, but it is still better than her losing too much weight. She became extremely underweight as a result of being sick all the time.

There were 9 other families. Some babies and kids had tubes, some had medical issues, others weren’t eating until fully distracted with iPads, or only eating puréed food. But we all had a common denominator, eating problems.

It was nice to be around people with the same problems, and honestly also to see more skinny kids. Because at home people don’t understand the stress and frustration you endure when you have a non-eating child. It tends to be brushed off by comments such as: let her stay with me for a week, she will eat. Or: sometimes my child eats little as well, or: you are too soft, you should be more strict and punish her. As if we haven’t tried everything, and we are just incompetent parents. Also, there is a difference between: eating little sometimes, and eating nothing all day. There is no favourite food I can give her, she has zero interest in food.

Parents who don’t have a child with a major food aversion or severe eating problems don’t understand this. The anxiety of trying to feed her, obsessively counting calories, being physically but also emotionally and mentally exhausted. The whole day revolves about ‘how do I get my child to eat, and how do I survive this day?’. When I go to bed I don’t want to sleep because then the next day will arrive, and I don’t want to face the next day.

During the time gap between the introduction and the lunch play picnic, we took Elodie to the botanical garden to feed her another Nutrini Creamy. The botanical garden doesn’t require an entrance ticket which was a nice surprise.

During the play picnic they mainly serve sweets, and snacks for the kids. This is ‘easy’ food which will help them learn to eat. There is a buffet breakfast and warm meals during lunch and dinner for the parents and children. It’s great to be pampered in a way, we don’t have to think about cooking, doing the dishes etc. We just need to focus on our therapy.

At home Elodie sits on a high chair at our dining table, and normally eats some pasta. Here, Elodie wasn’t too interested in the food offered during the picnic. She was too busy to move around the stools in the room. We were able to let it go, and let her do her thing. But at home she eats more and internally I was a bit conflicted about this.

The kids get really dirty during the play picnics. I really had to get used to it. Touching and feeling the different textures is a good sensory experience. This is important when learning to eat. Luckily we brought ample clothes for her with us!

From 13.00 to 16.00 we went home so Elodie could have a nap. She was so tired she fell asleep immediately. We had to wake her up to be on time at the NoTube Eat Campus.

On our way there we fed her a fruit purée, which she didn’t entirely finish. She was a bit fed up with me feeding her. We crossed a lady with a dog which was good because Elodie eats more while looking at animals. She was nice and kept looking, so I explained our situation. Apparently she is a doctor in the Graz hospital as well, and she would like to help us. We planned a meeting for Sunday.

Getting dirty during the play picnic

Elodie wasn’t that interested in the sweets and snacks during the dinner play picnic. However, when one of the dads went outside, and left his plate on a chair, Elodie was munching from it for quite some time. She liked the humus. Obviously I was super glad she was eating. We discussed with the team that I just leave a plate with regular food in the room from which she can eat during the picnics.

We received compliments from the team that we were so relaxed during the play picnic. But we knew, that they didn’t know the reason why we could be hands off during these picnics.

On our way home I fed Elodie the remainder fruit purée and a Nutrini Creamy. We went to the apartment to drop some bags and then left for the supermarket. Elodie is less bothered by me feeding her when we are in a supermarket because there is plenty for her to see and feel, if she is distracted we can feed her. She hardly eats anything on her own, so we have no choice.

Back at the apartment Elodie managed to fall asleep much earlier than at home, which is perfect as the days here start quite early. Our appartment is less than a 10 minute walk from NoTube which is really convenient.

I was updating some family and friends about our day, and they were telling me to be fully honest about our ‘feeding walks’. But due to our traumatizing experience with the last hunger provocation during Elodie’s hospitalization, I was just too afraid of changes to our routine. I know that this way of working is not sustainable. It’s very detrimental to my mental state.

After talking to another mum online whose son went to NoTube earlier this year, she shared her thoughts with me and it finally hit home. She said that our kids were already the easier cases for NoTube as they can eat a bit and are not afraid of food. The NoTube team is very experienced and not judgemental. Also, this is our last resort to help our child learn to eat. They really want the best for our kids and for us. She told me how she felt and how emotional she was as well while being at NoTube. But seeing how well her son is doing now it was definitely worth it.

So, I decided to tell them the whole story the next day. I discussed this with my husband, and he agreed because it would provide much more value, as long as it was manageable for me. Due to my post-partum depression many things are much more difficult for me to handle now. Also, being a first-time mum with a special needs child, which many people don’t understand is quite a challenge.

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