22/5/2017 A Pink Streak.

I was loading the dishwasher last night when a little pink streak shot past me into the kitchen, snatched something out of the drawer, and ran, chortling, up the stairs. LMonkey business was afoot. We’ve had to deal with some very challenging behaviour lately. I couldn’t bear to look, so I sent Daddy to investigate.

He was gone for ages. Meanwhile, I pretended not to realise that the lack of noise from upstairs was probably a cause for concern. I’d just finished loading up, and was contemplating accidentally-on-purpose dropping the last couple of things that wouldn’t fit in (because hand washing dishes is, like, sooo last century), when Daddy called me upstairs.

‘He’s been such a good boy’, Daddy said. Apparently Freddie had simply decided for himself that it was bath time, had arranged his shampoo, body wash, and the rubber hair-washing jug on the side of the bath, put his toilet seat and step in position, and got himself undressed before remembering to fetch his medicine syringe from the kitchen. By the time Daddy got upstairs he was already sitting on lavatory. Daddy ran the bath for him, but he brushed his own teeth, of his own accord, and washed himself all over. By the time I got upstairs he had his pyjamas on and was sitting in bed reading a book.

We praised him extravagantly, because this is just the sort of behaviour we want to encourage. But, not wishing to sound ungrateful, we’d like to encourage it to occur an hour later, at the usual time – because early to bed means a 5.30am wake-up call for Mummy, who doesn’t do that sort of thing (unless she’s catching a flight somewhere exotic. Which never happens. So no, she definitely doesn’t do that sort of thing).

Of course, this probably means only one thing – the rest of the week can only go downhill from here.


11/1/17 My Bad … or is it?

You wouldn’t believe it, but this angelic-looking little specimen has given me hell this morning. Even I, stubbornly positive though I am, have bad days.

Mornings have long been a flashpoint. Freddie does not like to be rushed; he likes to do his own thing, in his own time, and he has different priorities to me. Getting ready for school, therefore, is often a fraught business, with me needing to get him promptly toileted, fed, medicated, toothbrushed, washed and dressed before the minibus comes, and him wanting to do anything but. We have a visual timetable for getting ready, with ‘rewards’, we try to leave ourselves plenty of time, we try to incorporate opportunities for some choice so he can feel he has some ‘control’, but often he just point-blank refuses to cooperate. Some days he starts out really well, then suddenly, as though a switch has been flicked, his demeanour changes completely – and I can rarely tell why. When I require him to brush his teeth or get washed, or dressed, he will lie face down on the floor with his arms clamped to his sides, making himself heavy like a dog that doesn’t want to go walkies. At eight we are beyond the point where it is desirable, or even possible, to pick him up, or do everything for him. If I try, he fights – hitting out, biting, kicking and swearing.

Today none of my usual strategies worked, I couldn’t see what I could do to get him up off the floor, much less ready and out of the house. I saw a day in the future when Freddie would be bigger than me and I wouldn’t be able to manage him at all. I think I must have reached the zenith of stress: I thought I was going to collapse.

In tears I rang CAMHS and left a message for our LD nurse. The last time she came to see us, she said that she thought we were doing really well and would soon be discharged. ‘Doing well’, I think, means that they’ve got me trained; they know I understand how to support Freddie’s behaviour, and that I implement the strategies they give me. No one seems to be willing to listen when I say they’re not working. I know our nurse does her best to help me, but her hands are tied to an extent because the service is overstretched. 

I try not to take any services I think we can manage without. On the rare occasions when I do ask for help, it never materialises; I get suggestions for the things I should be doing to help myself, but invariably these are things I’m already doing. 

When I needed support with one of my elder children’s additional needs I had no choice but to help myself because there were no services locally that we could access. I’ve been doing it myself for a long time, I’m one person, I’m human and I’m running on fumes now.

CAMHS is the only support we get with Freddie. The nurse did ring me back. She did listen, she did make suggestions, and she’s going to come and see me again. But I can’t help but feel that we’re going over old ground with the ABC charts she’s bringing. If I could identify the triggers, I would have done by now, and would have acted on it. 

She once said to me that my problem with Freddie was that my expectations were very high because my older children were so well behaved (she’s met them both several times, seen them interacting with me and Freddie). 

That’s not high expectations, it’s called having high standards. It’s no accident that they’re so well behaved. 

There’s some issue here that’s not being addressed. We need a proper assessment. But that’s the one thing they seem most reluctant to give us.