AIBU to feel frustrated by horrendous food mess with my disabled 4yo?

[PeachPearPlum7]

I’m feeling really worn down by the state of things at mealtimes/snacks with my 4yo. Even the smallest, least crumbly or melty snack ends up in a full on mop-the-floors, change-her-clothes disaster zone. I’m constantly on my hands and knees picking up food and cleaning and she gets through multiple outfits a day.

For context: she has a physical disability similar to moderate cerebral palsy and low tone. She can walk and is bright, well behaved, and not cognitively impaired (per paediatrician). Her speech delay is motor-related. She has dystonia in her hands so poor fine motor control (still mostly palmar grasp), and she dribbles constantly.

The mess comes from a combo of things: dribble, low tone in mouth and lips, breaking food into tiny pieces, and using her hands to push food into her mouth. It just escalates.

We’ve recently moved her from an IKEA high chair into a Tripp Trapp-style chair, so the big coverall bibs no longer work. We now use silicone catchy bibs, but they only help until she leans forward or uses her hands to sign (we use some BSL), and then everything tips out—onto her and the floor.

I do set expectations (use a fork, keep food on the plate, use cutlery not hands, etc.) and remind her during meals. Sometimes the first few bites go well, but it never lasts and we end up in the same mess.

She isn’t being naughty. She tires easily (especially evenings), and just sitting upright, swallowing etc. already takes a lot of effort— maybe eating neatly seems like too much on top? But also, I don’t see any other SEN families dealing with this level of constant mess - is it going on behind closed doors?

Complicating things: she was tube-fed until 20 months and we worked really really hard to wean her off. For a long time it was “anything goes” if it meant oral calories. She’s still very slim, we fortify food, and still give prescription high-calorie milk before bed. We also try to keep mealtimes low-pressure and positive, and often end up using TV towards the end just to keep her eating.
But… she’s 4 now, and honestly she makes much more mess than my 9mo doing BLW. I find it overwhelmingly irritating how much time I spend cleaning and changing her. I try not to show it, but I do get snappy sometimes, which I hate.

So—AIBU to feel this frustrated? Should I just be grateful we’re off the NG tube and accept it?

And does anyone have any practical tips—or stories of it getting better?

Shower curtain on the floor under the chair might help, I used that when mine were toddlers, and then for the clothes, do they do painting aprons that might fit? Like the thin ones they use in school? They could be wiped clean

Hi, I have no advice but you’re not alone. My 3.5yo is PEG fed and we’re working so hard to introduce foods / textures . We’re at the play / mess / crush stage and my outward voice is going “oooo so crunchy, big smash!” Whereas my inside voice is going FFS🤦🏽‍♀️

could you maybe do a feeding outfit ? Or an old t shirt of yours what you put on over her current clothes and then the mess goes just on that old top that you can remove ? I have a messy eater older kid and I do that with meals that stain ! X

My DDIL used to take the clothes off her weaning babies at meal times so they were in their high chair, bare except for their nappy, clothes stayed clean and child could be mopped down with a washcloth when finished ... just wondering if something along those lines might work for you ? 💐

Is she under an OT? They can help with ideas for adaptive cutlery/ strategies to help as much as possible within the capabilities of her motor skills. What about one of those painting overalls that have massive coverage - may help reduce the changed of clothes?

Painting apron - you can get ones that basically cover pretty much all the body.
shower curtain or tarpaulin underneath that you can hose down and hang over the line to dry.

We also had a hungry dog mooching around eating all the bits.

Full cover up for eating

Wipe Clean Apron (3-10 Yrs) | M&S | M&S https://share.google/EE4HdBvqj8a46WJbj

Would a SALT help? I know they help with adults with eating difficulties?
Could she have her main meal at lunch when she's more alert if tiredness later on is a factor?

Fine motor control requires good core stability if she’s tired and struggling to maintain postural control then using cutlery will be all the harder. Sounds like she benefit from a chair that gives her more postural support so she doesn’t tire as quickly. Some adaptive cutlery would also probably help. There are a lot of specialist seating options but an OT assessment might be useful to find what will support her best.

You need newspaper and T-shirts for a child of about 9 (buy a bundle of cheap ones). Tshirt over the top of clothes before eating. Newspaper under chair and just roll it up and bin it. Flannels and warm water for the face and hands. Some times the old ways are the easiest.

A polite dog who will only eat scraps from the floor and not steal from hands. Honestly it is your only hope.

Possibly something like this if she’s still
at a palmar grasp stage as a standard fork may be too difficult/ tiring for her to hold

@glassof thanks for replying. I have thought about this, or one of those big catchy attachments to the highchair that sit under the feet. But cleaning those after each meal seems similar work to cleaning the floor? And there's too much food to leave it and just clean it at the end of the day. Maybe I should trial it though, will give it some thought!

@Purplrain firstly GOOD LUCK with weaning! It is so hard ( practically and emotionally). I found a podcast called 'tube to table' helpful for camaraderie and helping me stay positive. I will also think about some big t shirts or aprons. We'd just need quite a few to last the day, but maybe that would be easier than changing t shirt, trousers etc...

@JayeAshe my partner and I have joked about this. And about just putting her and the high chair in the shower! But she wouldnt be up for this, shes so skinny she gets cold and I think she has slight sensory issues, she hates being naked (and wierdly it seems to mess with her balance). Thank you though, I do plan to do nappy only meals with my 9mo once the weather is warmer.

Is she on anything to control the excess saliva?

I don't have any mealtime specific advice op but as someone who grew up with a disabled sibling I can tell you that what you are feeling is the strain of being a carer. It's a tough job. With non disabled babies they grow increasingly independent and gradually the exhausting load of caring reduces. With a disabled child there will always be extra caring work for you whether that is dealing with feeding tubes, continence issues, motability issues like hoisting and wheelchairs or other associate conditions like seizures, medications, physio therapy or the many other things people have to manage on top of their normal day to day lives. Know that you are not on your own.

How much support are you getting? Are you getting the financial support you're entitled to as a carer? Can you explore respite options?

Practically plastic sheet underneath and wear a painting type pinny.
I also query with OT involvement. Low tone and continuosly trying ie when eating could cause issues with fatigue and concentration which can really affect movement and esp mouth control. They were great with a fc who struggled with fine and gross motor skills.

Something like this to catch the food?

@PeachPearPlum7 I feel you. When it’s incessant like that it’s very wearing. DS was much the same. Now a young adult, at uni etc, still unable to eat efficiently. Clothes always dirty, food on the floor, often eats with fingers (but can use cutlery just about to an acceptable level - can’t cut own pizza or steak for example). He still has poor oral motor control so drool / spluttering drinks / food falling out of mouth is common.
My only tips - always use decent biological washing power to get out food etc. shower curtains in the floor to tip into bin afterwards, I used DLA to pay for a cleaner too - keeping on top of everything was just too much - and time. It’s a lot better now but it’s still tricky, especially as changing clothes is still such hard work!
We had all the chairs, cutlery etc, did all the feeding therapy, OT, physio etc. I think it helped…

Ask for some Hyoscine patches to help with the saliva and very best wishes to you all.

Is she under occupational Therapy? They should help.
If she's small she should still fit the coverall long sleeve bibs.

Have you seen an OT about this?
Is she supported in her chair with cushions if needed so she can sit up comfortably?
Can she rest her feet on something solid?
Have her main meal earlier (lunch or breakfast) if tiredness is an issue
Ditch the cutlery and plate. Put the food straight on the high chair.
Painting apron to cover her (or one of her dad's old shirts put on back to front)
Shower curtain under her chair. (have multiple so you can put them in the washing machine daily rather than cleaning on your hands and knees)

I did try using a long sleeved painting smock for a bit, the fabric, non waterproof ones were the best for easy washing and not having liquids slide off. It worked for a while but as he got older he was unwilling to wear it. It was also something else to wash but I could at least keep it for more than one meal!

I think I used to put my daughters chair over a wipe clean tablecloth as our floor is textured and hard to wipe. At least its brown though so mess doesnt show!
I agree use DLA money for a cleaner if you can.

Thank you so much everyone for replying. Just re some of the suggestions,

• anything disposable to wear or put under the highchair is a bit difficult. Just from wet wipes, kitchen roll and nappies we struggle for space in our brown bin. Adding newspaper from 3 meals a day would quickly overwhelm our bin so I dont think this is workable.

• anything to hose off in the garden or just eating in the garden once warmer also worries me because there is just so much food dropped i think it would attract rats.

• using an apron is a good shout, but still will be a work to pick off the big bits of food. Our poor washing machine is a trooper but the filter already regularly packs in from food gunk so we're having to be careful to minimise food going in there.

Sorry to be so defeatist. I feel like its a bit of a first world problem. Im a mum. Cleaning up is half the job. But it's just so exhausting. I feel so jealous of the mums of much younger toddlers who can toss them snacks without a second thought, or whose kids can casually trot off to play after eating, rather than have to wait for a full clean up, picking food out their hair etc.

Thank you so much everyone for replying. Just re some of the suggestions,

• anything disposable to wear or put under the highchair is a bit difficult. Just from wet wipes, kitchen roll and nappies we struggle for space in our brown bin. Adding newspaper from 3 meals a day would quickly overwhelm our bin so I dont think this is workable.

• anything to hose off in the garden or just eating in the garden once warmer also worries me because there is just so much food dropped i think it would attract rats.

• using an apron is a good shout, but still will be a similar amount of work to pick off the big bits of food. Our poor washing machine is a trooper but the filter already regularly packs in from food gunk so we're having to be careful to minimise food going in there.

Sorry to be so defeatist. I feel like its a bit of a first world problem. Im a mum. Cleaning up is half the job. But it's just so exhausting. I feel so jealous of the mums of much younger toddlers who can toss them snacks without a second thought, or whose kids can casually trot off to play after eating, rather than have to wait for a full clean up, picking food out their hair etc.

I'd ask OT for an assessment to see if they have any suggestions. Is she on any medication for the saliva?