This is a day in the life of J, from the perspective of us, his parents. I have inserted ‘(Good)’ into the title as I have chosen not to include one of what we term as his ‘episodes’.
I have tried to be factual, and avoided describing our feelings or moods, although you may surmise we try to maintain as calm and level as we can, especially during moments we judge Js’ anxiety levels to be high.
A (Good) Day in the Life of J
Having woken at 3am to go to the loo, J then goes into Mummys’ room instead of returning to his own. He asks Mummy if he can get into her bed. Mummy, without waking up properly mumbles a reply so he climbs in. From now until 6.30, he will ask her a question as often as every half hour. Questions such as “Who is taking me to school this morning?” or “What are we doing today?”. At around 6.30-7 Mummy will tell him he can go downstairs for some breakfast.
His favourite breakfast, rice crispies are always in the cupboard. However he may decide he’s not hungry and refuse to have them. He used to eat a bowl of porridge, 2 slices of toast followed by fruit such as grapes or strawberries and a yoghurt but he hasn’t done this since summer 2014. So today he is offered toast and strawberry jam (an old favourite), and eventually, after much cajaoling, he eats ¾ of a slice, while repeating the words “not hungry” over and over.
Then it is time to get dressed. But today his response is “no, don’t want to”. He has to be corralled into doing it, sometimes a ‘race’ is suggested: “who is dressed first?”. It’s a good day, he has gone along with the game.
He is then asked to go upstairs to brush both his teeth and hair. He Ignores this request, choosing instead to continue playing with lego on the living-room floor. At 5 or 10 minute intervals this request is repeated by Dad as well as Mum. 20mins later Dad calls again for him to do these things to which his reponse is to scream “I am, I am, I am !” as he stands to go upstairs. Its’ a good day as he has decided to go up and do them.
As with many little boys he will often lie about having cleaned his teeth or spend only a few seconds doing them.
As time to leave for school approaches, he becomes steadily more manic, making jokes and giggling rather than getting ready. It’s cold outside so when asked to put his coat on an argument ensues with him insisting he doesn’t need it/ its’ uncomfortable/ he doesn’t want to. Today is a good day as he does at least agree to take it and picks it up. Mindful of his asthma, and with time running short, Mummy physically puts his arms in it, at which point he becomes sullen. This quickly escalates to him shouting “You hate me, you hate me, you hate me”. By now it is out of the question that he will put his own shoes on, so Daddy sits him down on the stairs and puts them on for him while he kicks his feet up and down to make it more difficult. His jumper (he only has a t-shirt under the coat) is put into his bookbag so he does at least have it with him.
Mummy says “O J, come on, you need it on, we must go now”, and she guides him by the hand out to the car. Daddy is standing nearby so he reluctantly allows her to lead him, if Daddy was not he would otherwise have run away.
In the car, for the 5minute or so duration of the drive to school he asks for reasons why he couldn’t walk or cycle there; “There wasn’t time and I’m going straight on to work”. “But why couldn’t you walk back for the car then go to work?”, “There isn’t enough time J, I’m already starting late”, “But we could go in earlier then?” and so on. No answer is satisfactory. He is kicking his legs up and down the whole way.
Mummy arrives at an after school crèche (he attends 3days each week). He runs and hides when he sees Mum arrive, and requires several minutes of gentle persuasion to go with her. Today is another day where he has decided he won’t get in the car. He runs around and around the dark car park until eventually he calms a little and gets into the car. Mummy says “What was your favourite thing you did today?”. “I can’t remember”. “Ok, what’s the best thing about today you DO remember?”. “Oh Mum you are stressing me out”. His tone is condescending, “Can we go to McDonalds?”, he knows the answer will be no as he has rarely / never been there from Kids Club. So when he gets the inevitable “no, sorry, there’s a nice dinner at home” he can then moan and complain.
Once home he will normally be allowed his school-day allowance of 30mins on his tablet which seems to calm him. Mum keeps him informed of how much time he has “15mins left J”,”5mins J”. Its’ a good day so he turns it off when asked without complaint.
Dinner this evening is sausages with mash and sweetcorn. All favourites of his. He eats half before starting to complain and eat slowly, picking at it. On a good day like today, Mum offers his favourite yoghurt IF he finishes his sweetcorn and it works, he clears his plate under protest asd he is full. Once he has eaten the yoghurt he asks for another.
Upon learning it is nearly bedtime he is suddenly hungry. He is allowed a cereal bar and glass of milk while in bed. He doesn’t want to put pyjamas on, Daddy says he’ll race as he is putting his on too which works on a good day such as this.
He becomes manic, joking and running around rather than cleaning his teeth and getting into bed. Dad explains this isn’t appropriate behaviour for bedtime and he should be calm/ needs to chill out etc.
Its’ Mummys’ turn to read his story for anything up to half an hr (Alice in Wonderland tonight), throughout which he fidgets and plays with the soft toys on his bed, rarely looking at Mum. He interjects with questions and giggling, Mum only pauses to take a deep breath and carry on. He knows any discussion is after she has finished reading and is kept brief by her, else he will be talking for hours.
Mummy then sits in her room with both bedroom doors open, perhaps working on her laptop or doing ‘brain training’ on her Nintendo DS. He gets up to the loo 3 times, before settling to sleep an hour since bedtime story finished. On other nights he will go to the loo 6 or 7 times and to sleep 2 hours after bedtime story. But not today, because today was a good day, in the life of J.
Written by M, J’s Dad, approved by A, J’s Mum.