Wednesday, 12 June 2013


It is not possible to spell the sigh I have just exhaled but 'huuuhhhhhhhhhhhhhhhhhhhhhh' may do it.

First of all I am so triumphant I could spit.  Because the issue at hand on this particular day in the year of our lord 2013 is that my dear boy is going quite swimmingly in the brainbox department.  Developmentally disabled?  Perhaps in the shoulder girdle but not even close between the skull bones, you knuckleheads.  Not even close.

The issue at hand on this particular day is that Master Squidge has the fully functioning developmentally accurate brain of a 16 month old but the upper body physicality of a child half his age.  This, friends, is freaking exhausting me to the point of tears.  But so so many happy ones lately I cannot begin to tell you.

Ok, maybe I CAN begin.  But you better sit down, pour a glass of wine.  Fire up the grill.

Hmmm maybe not the last bit if you're in England.  The weather is pretty developmentally disabled over here.

That said, let us make a list.  These doctor types like order and boxes, so hell, let's throw them a list.  I'd like to throw them a left hook, but a list won't scar my knuckles.

Right.  So in the past two weeks, Rukai has developed so quickly my head is spinning.  We can now clock:

> two teeth finally erupting which means chewing.  Chewing.  Halle-flippin-lujah, pack that sludge away and break out the barbecue ribs.  Ok, maybe not yet, but bread is now on the menu.

So we go to:

> eating a cookie unaided
> sampling a fish finger and going back for more
> sampling water from a cup we are sharing and now flat out tantrum when I give him a bottle
> pulling up on a toy, pulling up on my neck and bouncing in my lap just holding on to my shoulders
> aided steps across the floor
> loading up that ball-tower thingy and rolling those suckers down oneafteranotherafteranotherafteranother
> playing (rolling) catch with me
> jumping up the growth charts (DS and 'ordinary' from 50>75 centile and 9>25 centile respectively)

And he's chucking everything on the floor.  Hide the glass, pocket the phone and don't let his hands near that plate of spagh--- shit, good thing that carpet is red.

I have started calling him Shoe-dini when we go out because footwear just magically disappears wherever he sees fit.  A few weeks ago I was doing a Race for Life training walk en route to the grocery store.  20 minutes in, we walk into the store.  I look down.  The sandal is gone.  We re-traced our steps twice before we found it a block away from the shop on top of a garbage can.  Good samaritan I heart you.

Digress-a-roony yet again.

'Only now throwing things on the floor?  My eight month old did that' you may say.  Indeed.  Imagine my angst. 

Imagine my pride. 

Now imagine my stress. 

Here we have a 16 month old going for it with such gusto he appears to be starting to think he can just go and cook a frittata and win an F1 race just because he's got some pointy teeth buds. He now gets seriously pissed off when he can't physically do something his brain is telling him he's fully able to do.  Because he feels as his parents feel for him.  Good boy, you can do ANYTHING.  Go for it.  He goes for it.  He falls, bashes his head, scrapes his cheek on the rug, can't pull back up, screams blue jesus at me to straighten him back up and does it again with the same result.

The ferocity of the way this child attacks every skill moves me in a way nothing ever has.  He is so determined, so stubborn, so much like me.  I am so proud of him.  I wish you could all have one of him.  You would say as I do: 'A problem?  This child is a problem?'

No.  No he's not.

'What low muscle tone?' says he.  'I can do anything.  My mommy says I can.  My daddy says I can.  I. Can. Do. Anything.'

Yes you can.  Go.  Do.  But please dear god, do it after 12 hours of sleep so I can crack open that bottle of red.


Now back to that huge sigh.  Why?  Daddy is away.  For two weeks.  That may as well be two hundred years.  This single parent thing is enough without looking after a child who thinks he's got the capability of a five year old but the physical ability where he's at.  I'm completely used up, because I cannot rest.  Not a lick.

In the past few months, we have come to the conclusion that due to the level of stimulation Rukai has (and it's pretty constant, 24/7 when he's awake) his brain is developing just fine, despite his physical limitations. When he wants to do something he is physically unable to do, he screams (or becomes Crabapple Joe as I have now named him) until you get him into the right position where he can work on his newest thing.  And he works like a miner.  He grafts like a jobbing actor.  He brings himself to the very limit of his ability, to the point of total exhaustion, like a prima ballerina.  Then he sleeps like the dead for 12 hours a night.  I cannot tell you how much I adore his fire.  His grit.


His support network is a fixed number yet it is endless.  Because there is always someone to interact with him, to show him, to teach him, but more importantly to let him teach them.  And believe you me, Rukai is the teacher here.

But he is not slowing.  And he will not stop.  And nor will we.

No comments:

Post a Comment