Exhaustion Isn’t What You Think It Is

For those of you wondering what life is like living with with severely mentally handicapped six year old, let me fill you in.

This week our little boy has been poorly, this is excellent timing given I’d taken the week off work to spend some very much needed quality time with Lindsey.

So instead of working on his EHCP and getting it finalised, and then taking a few days to ourselves to go out for walks, maybe grab a coffee, we have instead been sitting locked in a metaphorical cage with an unpredictable and very angry little boy.

This wouldn’t be so bad if said child were able to communicate his needs, or could have the reason for medicine explained to them.

Unfortunately none of that applies with Grayson.

So, we’ve been changing nappies (great fun, still doing that nearly seven years into his life), listening to screaming, screeching and wailing, and getting attacked.

What harm can a six year old do to a fully grown man, you might ask. Well, let me explain. This week Lindsey and have been punched in the face, kicked in various parts of the body and – most painfully of all – bitten.

A particularly deep scratch that just won’t heal.

Ten minutes before I decided to write this post, I had been punched in the head and had my cheek bitten, all of which was simply for having the audacity to help change his nappy. Earlier in the week he bit my knuckle and my wrist. The bites hurt less than the emotion you feel when he does it.

The pain of having to deal with this takes a vast psychological toll, the times other people use to relax away from work and stress simply aren’t ours. Weekends become something to dread and holidays are simply a no-no, Christmases- a time most people look forward to as a way to unwind and look forward to the new year – aren’t looked forward to anymore.

Yet we still keep on, because through this all we love our little boy.

Just the act of showering him clean gets me repeatedly punched, glasses go flying, my head aches and then when I’m distracted he drives his teeth into my arm.

Yet still we do it, because we know he needs us and he loves us.

Not nice to have your child bite you.

Don’t start me on the pain I feel for my daughter, constantly told to leave her brother alone, don’t kiss him, don’t hug him, don’t disturb him, all because we worry he might do to her what he does to us. So far this has been avoided and so long as we are still here I intend for it to stay that way.

Given all of that you might be able to imagine how absolutely grinding it is to hear people complain about their children being on their tablets all the time or talking incessantly. Be grateful for a child that can communicate, it’s a wonderful thing.

What’s On Your Mind Kid?

Grayson woke up today absolutely crying his heart out, like I’ve not seen him cry in a long, long time. And he cried like this for a solid hour.

Jon and I both believe he’d had a nightmare. A dark, scary, nasty dream that he couldn’t comprehend. Perhaps he thought he saw a monster under his bed, perhaps he dreamed he was alone. I’m not sure he even comprehends what a monster is.

This is a boy who doesn’t feel pain, who can sit in a nettle bush and you’ll have no idea until you change his nappy, a boy who didn’t even flinch for any of his immunisations.

Tears, actual tears, are a rarity.

Grayson, being contextually non-verbal, cannot yet tell me what is on his mind, I can only work through a process of elimination, the way you would with a newborn baby, not a five year old child.

First on the list, check whether he is wet or soiled, despite knowing that his sensory processing challenges mean he has no realisation of when he is, it might be that he’s now realised and doesn’t like the feeling.

Nope.

Next I try to cuddle him… absolutely not. I’m pushed and kicked at, the crying doesn’t stop.

Verona then, entirely of her own accord (bless her heart), fetches his cuddly toy, a drink and a yoghurt, and offers each in turn to him. All three are vociferously rejected.

Eventually he stopped…

Can a mother feel any more helpless? Seeing her child in such distress; screaming, writhing and lashing out. When you are powerless to help and haven’t a clue as to why it’s happening, it’s hard.

Still, we indulge in a moment of self pity, then pull up our big girl pants and carry on, never giving up on verbal communication.

Mark my words though, some cold and dreary morning my sweet, sweet boy will crawl into my lap and say, “Mummy I had a bad dream.”. I’ll soothe away the memories of the monster under the bed and make it all better.

We will get there.