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.