Language
  • English
  • French
  • German
  • Italian
  • Portuguese
  • Spanish
  • Swedish
Back to Firefly Blog

Eating… the delayed development way

Eating… the delayed development way

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.

As it turned out of course, many, many other factors would come into play to make Alex’s eyesight the least of our worries.

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.

Night after night I did this as it was impossible to do it during the day.

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.

It was just like trying to pat your head and rub your tummy.

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.

My little boy ‘spoke’. I heard his voice. I cried.

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.

Firefly Blog

Real life stories, issues and experiences of day to day life by special needs parents and
healthcare professionals.

As Alex Grows Up

Meet Our Blogger

This is, primarily, a blog about our little boy, Alex. He has an undiagnosed genetic condition which has resulted in global developmental delay with a visual impairment. In reality what this means is that although he’ll be 4 in July, he’s non-verbal, he learnt to sit up properly only within the last 6 months and is now a whizz at spinning round on his bottom to reach things and grabs at anything in his reach – safe or not… He needs help with every single every day activity and sometimes his hand/ eye co-ordination is off. It’s bang on, however, should you offer him a chocolate biscuit… He’s a mystery, an enigma and utterly utterly gorgeous. He’s also cheeky. And funny. We've started this page for you to keep up to date with him, watch his progress and track our fundraising efforts.

View Helen’s Profile

Become a Firefly Blogger

Would you like to write for Firefly? Join our blogger network of parents, therapists and professionals.

Get In Touch

Become a subscriber today

Join over 40,000 subscribers to our weekly newsletter with insightful articles just when you need them.

Join Mailing List

By using our site you agree to our use of cookies. Click here for more info.

Accept & Close

Please wait...