Friday

Jude’s usual bus driver is on holiday for a few days and when this happens, the taxi firm do not seem to see the importance of maintaining a bit of consistency in who collects and brings Jude home, let alone what time they turn up. So he normally gets collected at 8.10am but this morning he did not arrive until 8.40, still needing to pick up two other children. Now, with most children this would not be a problem, you can just sit and chill and watch tv or have some more breakfast, etc. However, when you have a disabled child who thinks he is being collected at a certain time it can be quite distressing when this does not happen. At 8.30 I called up the taxi firm office to ask where the guy was and was told he’s running “10 minutes late” (thanks for letting us know!) and when I expressed my frustration in that Jude would now be late for school and that he was starting to freak out, the response was “well, there’s not a lot I can do about it.” BRILLIANT! I’ll remember that one when I call up again and try and bang some sense into your people…seriously!

So, my morning started well as you can tell. I was stressed and exhausted, not to mention relieved he’d made it onto the bus without a meltdown.

My day got better and this afternoon, I went to Jude’s school to see his summer show. I was so proud of him as normally he hates these events and either stays in the classroom or sits at the back with a teacher and does not participate. This time, Jude sat independently with his friends (he normally has an adult next to him) and when it was his turn to go up and sing with his class, he strolled up confidently and stood so beautifully with everyone. Granted, he did not sing but he did some brilliant wasp actions (song about wasps in the summer!)

But then once Jude was home, we had a fairly typical set of behaviours which swing between wonderful at times to massively exasperating. To begin with, Jude and Elsa were sitting on the couch together and all was harmonious; I even heard Jude say to her “Elsa, is your finger bleeding?” (she’d caught it on a thorn in the garden). She replied that yes it was and he said “does it hurt?” Now this alone is incredible for Jude as he does not normally think in such a midful way.

BUT fast forward maybe 10 minutes and Jude was full on freaking out because I told him to take his ice lolly out the wrapper before eating it…oh yes, you did not read that wrong. Jude does this weird thing when he’s verging on meltdown where he wants something i.e. an ice lolly, then pushes it away saying he doesn’t want it, followed by wanting it again…so you get it for him…then he pushes it away and says he doesn’t want it. All the while, getting more and more distressed. I normally cut this little game short by taking whatever it is away and saying that we’re finished now and naturally this invokes a full on tantrum but with the inevitability of this anyway, I kind of like cutting to the chase.

Hilariously, to end the game this time, Jude ran off with the ice lolly (still in wrapper!) and lobbed it over the fence into the neighbours garden. Needless to say, he then wanted his lolly again so I had to point out that we could no longer continue this extraordinarily fun scenario because of what he had just done. Elsa, who is used to this behaviour, sat laughing hysterically at the image of Jude attempting to throw the lolly over the fence as it took him three goes to succeed. I have to say, normally when he does the “I want it, I don’t want it now” game, I get so cross but this one was just so funny, I had to laugh. Makes a change from crying I guess!

In true Jude form, following this spectacle he returned to lovely again and whilst we were all in the garden he asked me if Emmeline’s birthday is this week. I said that no, it’s in a couple of weeks and he replied by asking what we should get her for a present. All this mindful conversation in one evening! I asked him what he’d like to get her and he said “I think she’d like some jelly beans.” I asked him if it would be her or himself that liked the jelly beans and he laughed saying that it’s him.

He portrayed his swinging behaviour so expressively today. Thankfully, at bedtime he was in a lovely, chatty mood and we read together for a while and looked pictures in one of his favourite books (Alien’s love underpants). I love bedtimes with him when he’s happy as he chats so much more freely than during the day; I don’t know why but perhaps it’s because he’s more relaxed and not flitting around the house like he does.

Have you experiences of this type of erratic behaviour? This is part of the reason why disabled children are so exhausting, it’s their (Jude’s anyway) unpredictability!

 

 

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