It is really hard to summarise or quantify what has happened in the last 2 days. A lot of nervous relaxation (me and Shap) and a few choice words (Markus) interspersed with a flurry of activity around meal times. Initially, the elephant in the room was that Felix needed to eat, but nobody was saying that. We were waiting for him to realise that he had to eat. Us saying that he had to would have just annoyed him. He is a bright boy, he knows why Markus is here, he knows what he has to do. So we let him come to the table, or not, it was up to him. But he came, willingly. Then he would leave after a bite or two to set up his own restaurant on the floor.
In the skype conversations with Markus, before his arrival, I had told him about the advice we had from the Dr Sp, consultanat gastroenterologist at Bristol Children’s Hospital about getting the power play in the house under control before we started to wean. She had said that Felix could no longer be ‘the boss’. Markus said that Felix could carry on being the boss, but we had to be his clever empolyers. After 24 hours of observing our household dynamic, Markus said that in fact, we, his parents, were not his employers, but rather his servants and he treated us like that. He had no respect, expected everying to be done for him, and took no responsibility for his actions because there were no consequenses when he misbehaved or demanded us to do things. I greeted this revelation with wry humour as I was very aware this was how Felix saw us. He has said on more than one occasion (in humour and planning to get a rise out of Shap and I) that he was glad he had Mummy and Daddy as his servants. It would not take a rocket scientist to work out how this has come to pass – but Felix is now well, and so we really really (and according to Markus, Felix himself is actually crying out for this) need to stop his complete domination of the household. It came to a head on Friday night when he got annoyed with Shap at the table (I can’t even remember what exactly it was for) and threw his plastic beaker at him, hitting him directly on the forehead. Shap and I were both paralysed. If it had been Caitlin, she would have been sent straight to bed, but with Felix, we really didn’t know what to do. So from Saturday it was to be zero tolerance on bad behaviour, even though he was clearly hungry and angry, it was to be no excuse.
That morning, it was as if there was something in the air when we got up. Of course, Felix could not have known about the conversation I had had with Markus as I was driving him back to his house the night before, yet he seemed to be looking for reassurance of our love for him as soon as he got up. He was asking Shap for cuddles (that never happens) and he spontaneously told me that he loved me which is a definite first! I was peeling some oranges and put some in a bowl for him while he watched a movie. He said ‘I want them in a yellow bowl’, I said, ‘They are in a blue bowl, there is no yellow bowl available’ very firmly and he said no more. In the past, things not being quite precisely right would have led to a tantrum, but he just took it.
Yesterday, we also started pointing out to him the consequences of his not eating for 3 days. His trousers are loose. I said ‘If you carry on not eating for another 3 days, I will have to start buying baby clothes for you’
He said ‘You mean, I will shrink so much I will be a baby again?’
I said ‘Yes, you will just get smaller and smaller and be like a baby’
‘Yeuch, I have just had an image of what that would be like….. but at least I wouldn’t have to go to school’
‘Well, you would still be 5, a 5 year old baby, so yes, you would have to go to school, but you would be the smallest person there’
One of the things he wants to be when he grows up is a chef. Markus said,’.. but chefs have to eat and to taste the food all the time’. Felix said nothing. Then we talked about what he might call his restaurant. We chatted about various names, then Markus said ‘I know, it should be called ‘The Starving Chef’. Felix got a bit cross at that point so we moved on.
And by yesterday, he has started to eat something at every meal. Now we need to work on quanitities. Markus does not think that there is anything medical preventing him from eating. If the Lisinopril was causing a bad taste, then he would be rejecting everying while in fact he is enjoying the few mouthfuls, even making ‘nam nam’ noises. His body has had to go through so much that the hunger pangs he may be getting can be easily ignored. He has spent his first 4 years on less than 80% oxygen (normal is 98 to 100) and though tired was able to function, so to be going on 100-200 calories a day (we are tubing him 100ml yoghurt and 200ml diorolyle a night so that he doesn’t feel too awful and he decides to eat because he wants to, not out of desperation) probably feels fine for him. He is playing and mostly in a good mood. But we have kept screen time to a minimum and apart from a trip to the local play park, we have been just at home, life has to be a bit boring for him as if he is too diverted, then he can more easily be distracted from the task in hand. However, Caitlin has been out and about with either Shap or I, mostly doing things that Felix would love to do. He has a tantrum, but we tell him he can’t go because he has not eaten and therefore would not have enough energy to do the activity.
So, today was about sending home the message that yes, it is great that he is eating a bit, but he now has to eat *enough*. He had a school friend’s party today, but we said he could not go if he had not got the energy as it was a soft play party and without energy, he would not be able to take part. He had to eat a good breakfast and a good lunch. Markus talked to him in the play room and it became clear to him that Felix expected to go to the party even if he didn’t eat because this kind of consequence had never been put into effect before. I must say that I found that aspect very hard. I have never used these kinds of sticks and carrots with my children. Yes, of course, I had used star charts and rewards for specific goals (bum wiping, teeth cleaning etc) but it goes against my grain to use threats of withdrawl of treats as punishment. But it seems to be having a good effect with Felix in this situation. He did not have a great breakfast, but he ate a bowl of cheerios at lunch when he realised we were serious. He went to the party, had a great time, and made a good effort at the food, half of the chips and 3 bites of a fish finger!! Shap had taken him, and said that in fact, he ate more than a lot of the other kids there.
So.. dinner tonight was home made pizza, which the children helped me make. Felix had 2 bites and that was it. But we took the pressure off tonight as he had made good progress today. As Markus pointed out, if we keep harassing him, he might decide that actually, tube feeding is better after all as the adults are not constantly on his case and at least he gets to watch TV and have a cuddle when its happening!
So the next step is to get him to realise that he just needs to eat, that nothing is stopping him except himself, it is now TIME that he takes responsibility for this, and for his body. As Markus keeps pointing out, he is not a baby, he is a smart 5 and a half year old, he can handle it.