Since my almost-breakdown in November, so many people have been brought into our lives to support us.
The school is making themselves as amenable as possible when it comes to having to have the boys off due to Max’s lack of sleep.
We finally have a social worker which means doors are opening that we were unable to pass through without having one.
We have a sleep counsellor, more input from the occupational therapists, Max’s PECS book is now with us at home as well as nursery, and we have so many people coming to our house for appointments it seems like we don’t have more than a couple of days to ourselves each week.
It’s exhausting, but good.
After our sleep counsellor’s first visit on friday (we’ll call her SC for now), he woke at the usual time of 2.20am.
Bless her, she was so sure he would sleep through, or longer at least.
But since Saturday night, I’ve moved his bedtime to an hour later.
And he’s slept through since.
I don’t dare wonder if this could be the start of him sleeping through more regularly.
Hell, even if he slept through four out of seven nights a week it would be a vast improvement to what we’ve been going through recently.
Max is amazing me with the new things he’s started doing.
But with learning new things, comes a very tired little boy. Something hugely compounded with the 4-6 hours a night average he’s been getting over the last 3 months.
His aggression has reached new levels.
He’ll hit, kick, pinch, and headbutt when he’s upset about something.
On Friday, he managed to headbutt me right in my throat.
I was totally blindsided by it.
Luckily our SC was there, and able to help me get him down the stairs safely so I could go have a moment to compose myself.
The realisation that Max is at the severe end of the spectrum is becoming more apparent these days.
And that’s hard.
You can’t help but think of your childrens’ futures, and when I think of Max’s, I get such a guilty feeling.
I know that at some point, once he’s a teenager most likely, when he’s bigger and stronger than me.
When he’s hormonal on top of dealing with the frustrations he has trying to live in this world where everything is so difficult for him to even begin to comprehend.
There will come a point when I’m no longer able to care for him in the ways he will need.
The knowledge that one day I’ll have to let my beautiful boy be cared for by others, it makes my heart so heavy.
And it’s something that I do try to put at the back of my mind.
But it’s hard when he’s finding things so difficult and lashing out.
It’s hard when he’s kicking my shins and headbutting me in the middle of my chest, trying to claw at me and so frantic he just doesn’t know what to do other than fight everything that’s within reach.
We are now labeled a family in crisis.
Because really, we are at the moment.
But hopefully once everything that’s been put in motion has been put in place, we will be able to move on to being just a family again.
A different family, but a happy one.
One that can function well on a daily basis, instead of the struggles we’re facing at the moment.
So I’m putting my trust in the people who have come into our lives.
If Max continues to sleep through, everything else will become easier.
As it inevitably does.
Sleep makes everything easier.
Until then, I’ll keep grabbing naps when I can and make the most of the life we’re in.
I may not be able to change the situation we find ourselves in myself, but I think I might be able to with the help in place.
And I can choose to trust that change for the good will happen in time.