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?

• 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.

Open the window or back door next to where your DC is sitting and give the apron and shower curtain a good shake outside to get the food off before chucking in the machine

My CP warrior is 16 now but I remember those days vividly. The shower curtain on the floor is a good shout. Get 3. “one on, one in the cupboard, one in the wash”. Slush them through the washing machine to clean them, hang them over the bath on an airer to dry. Full apron for meals to keep her covered and relax a little about fully cleaning the chair each time.

Have a look at the specialist cutlery suggested, our OT provided ours. Keep working on those skills but don’t push it. It’s bloody tiring for them. It takes so much effort even just to be able to sit up. They have to think about every single movement and purposefully move every muscle. Finding the right balance between encouraging skills and not letting them just go for the easiest route is really difficult, but you have a long way to go and lots to worry about so pick your battles. It really isn’t important to work on table manners at this age. These are very specific skills they will take a long time to develop. You could find games to play which help develop those skills.

Also fully support getting a dog to help with the clean up. 😆

Yes - don’t eat outside / shake the shower curtain outside. We got foxes (and probably rats too - I just didn’t see them!) I did find shaking the shower curtain into the bin easier than sweeping but it is hard when all the mush is mixed up and stuck in clumps that don’t shake off and there are two screaming children who need attention . I feel for you, it’s totally exhausting and you’re not being defeatist, some times there are no easy answers.

Re DLA, yes we do get this and we have a cleaner once a week, very very much needed. But I still have to keep floor quite clean as 9mp is crawling now.

4yo is under OT, SLT, neurologist, community pediatrician, physio, etc etc. I have found OT really unhelpful. She has a special chair for nursery but it isnt much more supportive than her high chair which we've adapted ourselves. We've tried lots of cutlery but haven't found anything really helpful yet. With SLT, it has been so so so hard to get them to help with speech, which is where she needs the most help, so I'm reluctant to distract them with eating issues. My experience has been that they love to assess and monitor safe swallowing but are beyond reluctant to help with speech when a child is young. Now she's four they have only just finally agreed to do some speech therapy sessions.

We actually have an apt later this week with neurology team to discuss dribble. Patches and oral meds weren't recommended before because they reduce saliva which could impair eating and could make it harder for her to cough up mucus (she already struggles when ill). But I'm hoping there might be other options (physio exercies , maybe botox? etc).

What about a puddle suit over her normal clothes? Scrape off the worst of it, then wash. If you could get a couple, from Vinted etc, then you could rotate them.

I’ve just remembered the best thing we ever did for drooling / speech clarity issues was Talk Tools. I know it’s not got a great reputation at the moment but when our SALT did it with him we saw noticeable improvements. Lots of different straws and whistles of increasing difficulty and he then graduated to chewing gum which was very exiting for DS. This had a noticeable reduction in drool but as I say it’s not at being levels. We also didn’t use patches as he’s not producing too much, he just can’t always direct it properly. It ended when that trained SAlT therapist left and we never picked it back up again though.

She is your child and disabled so all you can and should do is feed her yourself and not let her eat alone

43 years old, Cerebral Palsy. Eating neatly is still a challenge! The trickiest bit is getting the food on the fork or spoon securely enough and getting it round to my mouth, keeping the implement level and the right way up. Especially if it's a spoon as you have to turn it and keep it the right way up. I would highly recommend

Angled cutlery with large grips - 

https://www.amazon.co.uk/KBIBCK-Adaptive-Arthritic-Parkinson-Right-Handed
It is much easier to get a steady grip on and also to turn to the mouth without turning over.

A plate guard  

which allows the spoon to be used in the dominant hand without the use of the other hand at all. When tired only having to coordinate one hand makes a big difference.
https://www.mobilitysmart.co.uk/food-guard?
Amazon do them cheaper but the pics of what they are are less clear.

A Dycem mat

Under the plate - with hold the plate still even with whacking from uncoordinated hands!
https://www.amazon.co.uk/NRS-Healthcare-Non-Slip-Circular-Diameter

Those are things I would use and that friends use to help make things easier.

Put a wipe down tablecloth under her chair then any bits of food will easily fall in the bin

Catchy trays can fit a Tripp trapp. That might help you out here. Can you spoon feed her even just one meal a day to reduce your stress around meals?

Yes, I wanted to say this too! Our lovely old girl is a very efficient tidier-up at the kids meal times… So much so that when she occasionally isn’t at home, I suddenly think ‘blimey these kids are messy eaters!’

Not sure you wanted a dog in your life, but if you did, sometimes the rescues have adult dogs suitable for families (maybe their previous owner died) so you miss the crazy puppy stage, just a thought! X

Thanks again all for the suggestions. Feeling a glimmer of hope that maybe there are tools which will help. And also it's helping me feel less alone with these challenges.

Re spoon feeding, i do spoon feed her a lot. I'm trying to do it a bit less to push her to be more independent and because I have to feed the 9mo too! But often just to get calories in, especially in the evenings, I am spoon feeding 50- 75% of the meal. But even spoon feeding still makes huge amounts of mess. She uses her hands to keep food in her mouth, then signs with them or touches her hair/the table/her clothes etc. And so much food falls out of her mouth and dribbles down her chin. Some into bib, some on the floor when she leans over to look at something etc.

I know you said no to newspaper under but we ended up using couch roll (that paper towel roll on beautician beds etc) and it really did make life much less stressful and squashed down really small in our bin.

Lots of good advice here, I have nothing to add except you sound like a fantastic mum who is doing an amazing job. As another SEN mum, I know that all those meetings with SALT, OT, psychology, etc etc are exhausting, wearing, emotionally and mentally draining, on top of the daily challenges you face parenting a little one with additional needs. Give yourself grace and don't beat yourself up over feeling snappy and impatient sometimes. Try and carve out a bit of time for you - a soak in the bath or a lie down listening to a podcast or whatever you find relaxing, even 15 mins is better than nothing. Sending hugs 💐

https://ebay.us/m/AWowQ8 would something like this work? It can be used on a table top chair

I find a tablecloth under the chair easier to clean than the floor because I can be half arsed with it through the day (shake over the bin and wipe the worst off if need be, fold it up and put it out of the way) and just clean it properly once at the end of the day whereas I need to clean the floor properly every time.

You’re not lazy or defeatist, it might be a small thing in isolation but in reality it’s part of a bigger picture and all these small things do mount up. This all still relatively new to both of you, it may always be a challenge to some degree but it will improve. You’re doing great.

The only thing I can think of is to use a plastic mat/shower curtain on the floor and get a window squeegee on a long handle to scrape up the majority of the mess from the floor. Surely easier than on your hands and knees with kitchen roll?

OP, I’m a sen mum and hear your overwhelm. Am going to DM you x

Might have been said but

1. A mat for the floor under the chair so you can literally just lift up either end and tip it into a bin. Chuck it in the washer or wipe down or leave to dry and brush up.

1. Poncho for her clothes. It'll reduce one job - her clothes. Take it orr from the back over her head so the food collects into her lap and bin the food. But thin ponchos and you can probably rinse it in the sink.

No idea if it will work but it would be the next thing I tried.

And yanbu. You've done amazing to get her fully off tube feeds, totally get the anything goes and telly to keep them on track etc. It doesn't mean you have to be grateful when you're picking up your cooking from the floor

Would a eufy robot mop/hoover be helpful? It might take some of the stress away knowing that the hoover could sort some of the mess without your input.
Ours hoover and mops daily before we get up, but you could program it or start it after every meal. Ours is the more expensive one that emptys, cleans and drys it mop without input so really helps keep on top of things.

It’s a shame your OT isn’t more helpful and sadly yes many nhs OT’s tend to prescribe chairs that aren’t that great which frustrates me because there are some fantastic specialist seating options out there.

Our chair sits in a tuff tray. I can sweep it or hose it or indeed let the two dogs in after (yes I know not everyone’s preference). That said it’s a durable, clean, system that can easily be cleaned

Seriously dyspraxic child - when tiny- I covered the floor in newspaper under high chair at home. Everything went everywhere so covered a very wide radius with paper and high chair in the centre.

End of meal I would then scoop the paper up and throw away… far easier than wiping down a plastic mat . Took seconds.

still had the hair and clothes to sort out - but I had shares in wet wipes it felt .

no complicated high chair with squishy seats etc. simple wooden one was the easiest to wet wipe down as no corners for food to hide in.

use separate reins rather than built in strap to secure them - have multiple sets that you chuck in the wash with the clothes and big bibs.

sympathise - it really is hard and the washing is relentless