He is extremely oppositional. It's not the usual defiance you'd expect from a child his age. It is EXTREME. It is constant. It requires a truck load of patience and creativity to deal with. I carefully choose my battles. I don't request something of him unless I have every intention of following it through. I avoid escalating situations into power struggles, because (paradoxically) this only reinforces his defiance. Convincing him to do something, requires the skill and tactic of a hostage negotiator.
Max's brain injury, affects the left hemisphere of his brain. Which means he struggles to understand and retain language. Which means I repeat myself a lot. Like seriously. A LOT. For three years, I've been trying to teach him that we don't throw things at people. Yet, here we are, still apologising to random strangers who've almost been knocked unconscious by something Max threw.
A day or even an hour with Max is hard work and completely draining for those who care for him. Yet, I am the person who has lived with this every single day, for the last 3 years. Some days, it's 14 hours of just me, Silvie and Max. If it weren't for my family, I'd have been committed to the cuckoo house a long time ago.
I'm often told that "I'm the weak one", that "I shouldn't let him do this, that, blah, blah". A therapist who might spend an hour with him, can say "he listened when I told him". That's great. That's totally awesome that you're so talented at dealing with my son. Now, take him home with you and repeat your awesomeness for 14 hours a day, for the next three years. Then we'll talk.
So many people, see me as 'weak' when they spend time with us. Some people say it directly, more often than not, it's implied. You know what? I agree. I AM the weak one, when it comes to managing Max's behaviour. Because I'm the person who's running this marathon and I need to survive.
If that makes me weak, then make me a badge. I'll wear it with honour. Because if I don't survive, neither will Max.
