Say something

‘How’s he doing?’

I get asked this question quite a lot, from friends, colleagues, other mums and people who’ve met Jude along the way.

It’s a difficult one to answer really and recently I’ve found myself defaulting to a standard set of answers. What I think they want to hear, what I want to say? I don’t know really. But I don’t answer this question with the actual truth. More a flowery version of the truth, a very economical one.

‘How’s he doing?’

‘Oh yeah he’s doing ok thanks. I mean hard to answer really in terms of his progression as it’s extremely slow, y’know, but he’s doing well. He’s still not speaking, but we hope that will come. His understanding of certain things is getting better. His communication with us is ok I guess, we understand what he wants most of the time.’

But what am I actually saying? Or, what am I NOT saying?

I’m not saying:

‘He’s still in nappies and quite honestly might be, forever… or until he’s in his teens, I actually don’t know, and I can’t bring myself to even think about this reality most days. It’s fine changing the nappy of a child who still seems like a toddler, but beyond that, that’s a whole different ball game, right? He is completely clueless and unaware of the fact he’s soiled his nappy, or he’s wet, so potty training still feels a million miles away.’

I’m not saying:

‘He still can’t actually feed himself with a spoon or fork without great assistance and so mealtimes for us are basically like feeding a 10 month old baby. Huge mess on the floor and everywhere if we let him try himself, generally four years of having a baby to wean, and we’re not there yet. My 4 year old is still in a high chair, with a baby’s bib, and no, I don’t know how much longer this will be for. Years maybe?’

I’m not saying:

‘He still sleeps in a cot, like a baby, in a sleeping bag to keep him safe, to avoid him attempting to climb out, and has a bottle of milk to go to sleep. At the moment. Christ knows when we’ll attempt to change this and put him in an actual bed.’

I’m not saying:

‘He’s still in a buggy when we go out as he has to be, he would literally run off like a one year old otherwise, with no sense of danger, fear or anything. But how long can he be in a normal buggy for, which he’s already grown out of, and tried to get out of as he doesn’t want to be in there. So, next step is buying him a special needs buggy for older children who have needs similar to his.’

I’m not saying:

‘He can’t even begin to dress himself or do anything for himself. Brushing his teeth is very difficult as he doesn’t even understand ‘open your mouth’ and just sucks on the toothbrush.’

I’m not saying ANY of this, but it’s all the absolute raw truth of our everyday life. It’s very very hard. It’s so challenging everyday. I’ve forgotten what life used to be like, when things were normal. I’ve forgotten it all.

 

‘How’s he doing?’

‘Yeah, he’s doing great.’