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What are your special needs frustrations?

What are your special needs frustrations?

Well one of mine is the fact that Zachariah is a monkey with his meals and makes a huge mess as he spits and dribbles it out, smears it across his face and hair and rubs it across his chest.

This started off as very cute, seeing his little cheeks full of tomato based food, somehow made us all look at him and say arrwhh!

It was new, exciting and a little bit fun.

He was exploring I would say!

He's learning how to eat and I'm also learning how to feed the spoon into his mouth rather than his eyes, nose and neck.

So I guess I'm saying it was totally acceptable, at 6 months old to have more food covering him than in his tummy.

However two years down the line, should it still be quite as funny, and cute?

When he has poor tongue control due to tiredness or something I don't think twice, the food comes straight back out and I re spoon it back in.

However when he is splattering a spoonful of Italian Tuna Mash in my face and then laughing, it's a whole new level.

Where I would usually laugh it off, and put it down to learning and development, recently I have been getting a little bit frustrated.

And here's why.

Zachariah doesn't really get enough fluid some days due to aspirations and coughing.

He can struggle with meals because he's too tired or just doesn't have the energy to eat.

Therefore when he's awake and alert it's a great opportunity to get something in him.(however Zachariah has other ideas).

Zachariah cannot just be filled up on snacks in between, he is limited to what he can have, and even then it has to be smooth, thick liquid form.

At the moment, if he refuses the spoon there is no other way to feed him.

Now he's not losing too much weight yet, but my worry is that if he continues the way he is, his weight may well become an issue.

With all this over my head I struggle to see the funny side anymore, I would love to enjoy the messy feeding because that's just the type of person I am, but not at the cost of my son’s health.

My other angle to this is that how long do I ignore Zachariah's cheeky behavior?

I only have Zachariah therefore not really sure of the age that you stop them being silly at the dinner table?

We all find it funny when Zachariah does it because for him it's development.

However for a child of the same age without disabilities when is it time to stop messing with their food?

I just wonder if I'm too soft with my boy and make excuses for him, is he capable of understanding the word no?

He will soon be tube fed, so a huge part of me just really wants to enjoy this time, watching Zachariah enjoy messy play with his food, as I don't want to look back and regret being so hard on him.

Firefly Blog

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

Rochelle Followes

Meet Our Blogger

I am parent to a gorgeous little blue eyed boy who has complex needs. I have a Facebook page, 'my daily miracle' where I share our life with others. I am an active parent who's working hard to make Zachariah's world more inclusive for him. I like to look at the positives and celebrate everything, but I'm also not afraid to show it how it really is when life gets tough.

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