Food. What a conundrum for a parent of a child with additional needs.
When we first entered the NHS system with Alex and our – thoroughly misguided – paediatrician suggested it could just be a problem with Alex’s sight that was delaying him (oh if that were the only thing…)
I remember asking my Health Visitor how you wean a child who is blind? And she told me that you did it just the same way as you do a neuro-typical child.
So far down the pile it is – behind inability to walk and talk – that sometimes I’m genuinely surprised to see a note from his school that his visual impairment teacher has been in. But I digress. We started with baby rice (yak!) and moved through to baby porridge, so far so good.
But it turned out Alex had an aversion to a) certain textures and b) chewing. It’s effort Mummy.
So my freezer filled – and filled – with more puree’d and mashed food than I had ever done with Emma.
My fridge covered in meal planners – 2 cubes chicken casserole, 1 cube broccoli (lucky boy) – weeks in advance.
Nursery was a godsend as suddenly it wasn’t just me doing all of this and their kitchen staff were brilliant – never too much trouble to mash/ blend/ serve something else if he just couldn’t manage.
Often he’d use his tongue to help mush it in his mouth. Or pop his thumb in his mouth to help.
It wasn’t pretty, but it was going down.
Delayed development meant his mouth muscles just weren’t there yet and, it turned out, he was too busy just trying to sit upright - there was no cognitive space left over to chew as well.
And then he was able to sit up independently. And suddenly, after what felt like an age of puree’d mush, of buying jars to take with us so we could go out somewhere as a family, little cubes of food became an option.
And little cubes became bigger cubes and suicide watch became less of an everyday occurrence (as, yet again, he’d choke on a piece of overly optimistic-sized meat) and he was able to eat every day food cut up into normal sized pieces.
In one of those moments of development not working in isolation… as those muscles improved he was able to make some sounds.
He’s babbling you understand, streams of nonsensical noises ‘dubbuh-dubbuh-dub’ being a particular favourite of mine, but there he is. In the room. Joining in the conversation as only Alex can.
We have a long, long way to go. Alex can finger feed beautifully, but he doesn’t always know when to stop, so you have to watch him the whole time to stop him over-stuffing.
He will pick up a loaded spoon or fork, but hasn’t yet worked out how to dig back in again for a refill. Sometimes he’ll just throw the fork down after taking the food.
This requires patience from us. And a lot of spoons.
But at the back of my mind as I watch my nearly five year old boy being spoon fed, flapping inappropriately, flinging his sippy cup across the floor and I know that – to an outsider – this must seem a ridiculous life to lead…
I am immensely proud of my boy. And I’m proud of my family too. For riding it out. For accepting him for who he is. And for helping make it happen.
The mobility solution that evolves with your child’s needsFind out more