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.

Family Photos? What Are They?

As a bit of a photography fan, I like taking photos. It’s something I don’t really get much opportunity to do these days, so when we go away I try and take a few shots.

Although I say that, but another consequence of Grayson being the special little man he is, is that I no longer take my DSLR away with us on trips. There’s simply no point, the number of times it’s almost been knocked out of my hands is scary, so smartphone photography it is.

Now, when most families go away on holiday they take lovely family photos. Photos that remind themselves of the good times they had and the places they’d been.

Not if their children are autistic they don’t,

We’re on holiday in Cornwall and have been here for a couple of days now, and consequently there have been two opportunities for us to take some family photos with Grayson.

Two opportunities that have been less than succesful.

The first was in the beautiful and – so I am told – famous Lost Gardens of Heligan. Now, I’m not saying he didn’t do well there, he really did, no meltdowns, no tantrums, nothing. It was great.

He still wouldn’t look at the camera though. In fact, he very quickly had enough. Sigh…

Still, not to worry, there’s still the Eden Project! Yay! Well, no, not yay.

This time we had the benefit of a real human being behind the camera. A real human being who couldn’t be more apologetic when they failed to get a decent photograph.

We didn’t let him walk away from that one though!

You see, this is pretty much par for the course with young Master Grayson, all the things most families take for granted are made ten times harder. A simple day out becomes a day of hyper vigilance and five year old wrangling.

So the next time someone says to you, “We’ve all been there”, tell them to get in the sea. We really haven’t all been here.

It’s not all bad though…

…there are still some charming moments, when the wee fella stands still long enough for me to get a shot in. That’s when you get photos like this.