Feeling depressed - can anyone cheer me up?

[Twowillbefine]

I have posted before. DS1 will be 4 in November. He is non-verbal ASD and today I am particularly feeling low about his eating. Will not feed himself (only dry things like biscuits), will not use spoon or fork, often will resist chewing, meal times always stressful. Although will eat a range of things it always seems under sufferance, I shout a lot :( and frequently resort to pinning his arms and jamming the spoon in.

Sunday dinner today: trying new approach of just having bits of potato, chicken, carrot. Still won't pick anything up, or use cutlery. Eats is fed) small amount clearly reluctantly and only with threats of not getting pudding.

Just feeling really low about this. He's got a social story about eating which is making no impact whatsoever. Oh and he still uses a Tommee Tippee beaker - can't / won't use cup.

Please tell me we can still make progress and this won't be a forever picture. :(

Eating has always been difficult for ds1 ASD aged 9 now. He has however, improved. He refused to use any cutlery for years and now uses a spoon. He has started to expand diet a little, particularly at school. I used to be very depressed about this, as he was very underweight and we had to supplement him with meal replacement drinks from doctor. Dd2 has similar issues, but on a less severe scale. It can get better, but you will probably need help. We eventually got help in form of a specialist school for ds1. Maybe ask if there are any such NAS schools in your area that will give you advice?

Not eating is a horrid problem. From your post I'm guessing that there are tactile issues about the feel of things in his hands, oral problems eg with the chewing, probably some difficulties with certain tastes and smells. Amberlight posted on a thread recently about how unpleasant cutlery feels to her even as an adult.

Speech therapists also have lots of training with eating and swallowing difficulties, if you're not already seeing one I suggest asking for a referral. An OT should be able to help with some of the practical mealtime difficulties particularly if you're lucky enough to get one with some interest in sensory issues. A dietician could look at his calorie and nutrient intake and find ways to maximise this within his rstricted range of foods. Finally, a clinical psychlogist would be able to help with a very graduated behavioural programme.

Failing all that, you could read up on all of the above and become a semi- expert jack of all trades.... and then put together your own programme, modifying it from MN suggestions

And the most important thing, you're doing well: he is taking nourishment and will finger feed some items, he accepts a spoon albeit with 'persuasion', sometimes he chews. So you have made progress and that means you can build on it and this isn't forever.

Oh poor you. It sounds draining, but your persisting is paying off, even if it is frustratingly slow. Eating is a real tricky one. Well done to you for trying new things and sticking with it.

I don't know if you know much about my ds, but I am lucky that he progresses exceptionally fast. Even he was still using a beaker until a couple of months ago and he is the same age as your ds. So, I would conclude that it really is a difficult thing to crack and don't give up.

Our DS2 was extremely resistant to using a cup. He's turned 4 in July and only just started using a regular cup (instead of a sipper cup) in the late spring of this year. And it was a long and painstakingly low process of bringing two cups to the table, pouring a miniscule amount of liquid into his cup from the full cup, assisting him using it. Then adding a bit more. As he got more comfortable with it (very very slowly) we gradually put more liquid in the cup. He now uses a child size cup that is perhaps half full and can drink out of it, although a bit hesitantly sometimes.

He does have some eating issues and also prefers finger foods to using a fork, which I think is because he gets highly frustrated with trying to use it with his coordination issues. When we're making a larger dinner, we try to always have a couple things that he will eat on the table. For example, we found that he loves the small yorkshire puddings - so we tend to have them with every roast meal, as that gets him started eating. We also tend to have some roast potatoes (sorry, frozen not homemade LOL) as he won't touch mash. Then with juice or milk for a drink at least he's getting something. He won't touch the meat.

We've been putting little bits of different foods (carrots, peas, broccoli, whatever it is we're having) on his plate, and not really commenting on it, just putting it there in case he's interested in trying it. No pressure to eat it. He's sampled steamed carrots a few times (and he's still not sure if he likes them or not from what I can see), and he's decided he likes processed peas (only in the last couple months - just suddenly started nibbling them). So now we make sure there are roast potatoes, peas, and yorkshire puddings with every roast meal.

As far as regular meals, we try to make sure that every other night we have something he likes, so that we know at least every other evening he is eating a good supper. Thankfully, DS2 is a good breakfast eater and can be relied on to at least eat a sandwich and some fruit at lunch (as long as it's either tuna mayo, egg mayo, or grilled cheese - he won't eat any other type of sandwich!).

I am struggling with DS2 regarding the use of the fork as well, so to give both of us a break, I try not to stress too horribly much over the silverware and make sure he has SOME finger foods, to make dinnertime less stressful for him. I've found that if he gets too stressed out over the fork, he'll just get frustrated and refuse to eat. I'd rather see him eating his peas with his fingers than not eat at all.

What types of things WILL he eat? And what things does he just out and out refuse?

Oh god, sorry so long!!

Thanks to you all for responding.

Triggles - no worries about the length , it's really helpful. I totally agree, I'd rather he ate with his fingers than not at all, but in fact the thing with the fork / spoon is that he won't pick it up at all and he also will not pick up any food voluntarily. Eating a sandwich has been a long job and he still doesn't bite so everything has to be cut up into bits. So even with bite sized, finger food-esque things on the plate he would still not pick anything up left to himself iyswim.

It's not so much that he refuses / doesn't like things - generally he will eat enough of whatever I have served but that is because I am "making" him eat it. He rarely appears to actively dislike anything but equally there are only a few definite likes. Will try your approach with the cup, it's so frustrating as he won't even pick it up. Have bought a new Thomas mug but even that doesn't seem to be enough to make him try.

Mariagoretti - we have been seen by OT and discharged. They don't think (and I agree) that DS1's "issues" with food are sensory in that sense, more a reluctance to try new things. They have recommended messy play which we need to stick at. He really hates things on his fingers. We are being seen by psychology (who did the social story for us). I suppose I just hoped it would be an easy fix which it clearly isn't going to be.

Whoops - sorry for the length. Woke up to feed DS2 and now horrible cold is keeping me up.

Two - I see what you're saying now. Let me think... some of the things we've done/tried (as DS2 also does not like to try new foods either):

• the "one bite for DS, one bite for mummy" game...(in fact, we used this last night as he was reluctant to put any effort into eating)... give him one bite of his food, then I take a bite of his food... for some odd reason he thinks it's funny and will take a bite if I do...after a few bites, he doesn't notice as much if I forget (oops LOL) to take a bite and it's just him eating... hehe

• as far as trying food goes, sometimes if he is poking about with a food, we will encourage him to lick the food item - that is how it progressed with the peas. He was given them at least a couple times a week for ages.. then one day he started lining them up on the plate and counting them... another day he started picking them up and looking closely at him... so we suggested to him to lick a pea if he would like.. some while later he did, and some time after he'd licked them a few times (a few weeks maybe?) he just decided to pop one in his mouth and eat it. He has dyspraxia so using the fork to stab them or even the spoon to pick them up can really frustrate him, so he's allowed to eat them with his fingers if he really wants at this point.

What specifically are his likes? I know from experience that you can hide an awful lot of different veg in spag bol! And because DS2 will eat almost anything in muffin form (goodness only knows why), he sees a lot of different muffins (made with veg and fruit from recipes off internet).

Are there any particular items of food that he will make an exception for and pick up to eat? That might provide either a way to get him to pick up other food or a reason he's doing it...happy to try and think of things if they'll possibly help... god knows I've been at the "bang head on the wall" stage many many times with DS2's food issues and wondered if he'd ever be able to eat normally!

Triggles - he will pick up dry food, like biscuits, rice cake, sandwich, hold banana etc. He will, if pushed, pick up jammy toast although is reluctant with this - his attempts to minimise contact would be funny if they weren't so frustrating! He wouldn't, for example, pick up a bit of carrot or potato. Really it's not what he will eat, as he will (in the end) generally eat what I give him. It's more how he eats. However nursery have managed to get him to eat his rice pudding with a spoon, so all I need to do now is to get him to do it at home and then with every other foodstuff - simples!

You sound like you have the patience of a saint! Hope it keeps going well for you.

Empathy coming your way Two . I have 3 DS - all dietary and intolerance problems and DS1 is dyspraxic and DS3 can't swallow. Like you - i pray for a quick fix, but each time a little bit of progress is made something else rears its head. The thing about food is it's relentless - for all concerned. You worry about what's going in/out - what else you can try. DS is probably stressed too. It's not as if you can say - oh, we'll leave it this week and try again next week! Your life ends up revolving around planning, preparing, coaxing and stressing/worrying about a basic function for living and growth.
Lots of advice given - i can only add a small bit about bottle to cup. We used a baby bottle lid - no bigger than an egg cup. inside was a slightly more liquid fromage frais/yoghurt. It needs to be runny enough to trickle when tipped to drink. This lets DS control how much is going in his mouth for swallowing without a sudden rush of fluid that he can't control. Once he feels in control, you can start to change the thickness towards water/milk, then a bigger cup.

LOL Two - not anywhere close to the patience of a saint!! There are days when I could scream in frustration!!

DS2 won't eat toast with jam on it, as he can't stand to touch the jam and get his fingers sticky. But he'll eat an apple down to the core and the juice from the apple doesn't bother him at all - just wants help washing his hands afterward. Makes no sense sometimes.

He won't eat mash, but we have (a couple times) managed to get him to eat those croquettes that have mash in them, in the hope that at some point he'll recognise the taste if we can someday get him to taste mash.

He'll eat chicken nuggets and fish cakes, so we'll try to pass off anything remotely resembling either to him. We've sometimes managed to pass off chicken kievs (cut up), escalopes (also cut up), and salmon fishcakes but not with any resounding regularity, it's a bit hit or miss. He won't touch fish fingers at all, even though he loves fish cakes.

We've managed to get roast potatoes in him by telling him they are "fancy chips."

Rice pudding, oatmeal, anything of that consistency he won't eat. Including yoghurt, which he loved when he was a toddler, but won't touch now.

We hide carrots in different things, like spag bol or any mince dishes that we can convince him to try. For some reason, he will occasionally try a carrot if we serve it with peas, which he likes. But if it's JUST carrots, he won't even try them. Apparently they're cooler when they are hanging out with peas.

But to some extent, I think he does gravitate towards the finger foods. Mostly because he gets frustrated with forks (and sometimes spoons). The only food he consistently will use his spoon for is cereals. We keep a cloth at the table because if he gets food on his hands or spills something (which happens often), he is very insistent it has to be cleaned up RIGHT NOW and he can't go back to eating until it's sorted.

Would he eat off those little fancy toothpicks if you brought some food on a plate with them stuck in to it (rather looking like a party plate) ? It's something I've considered with DS2, but I'm not sure what he'd do with the toothpicks. Might be a step towards using something to pick up the food and put it in the mouth so he can move on to using a fork.

don't know if this might help but we bought our two boys with ASD chunky cutlery off ebay and the handles are a piece of lego! as well as being more stimulating in a sensory way they might also spark his interest in using cutlery - (if he likes lego!)

Any one remember Tiny Tearaways on the tv. That Dr, Tanya Byron said that NT kids who are fussy eaters need to see new foods on their plate around 20 times bfore they will try it, so for ASD kids it's going to take even longer. I use this apporach with Dd3 I just keep putting a tiny bit of whatever the new food is on her plate and eventually it is familiar and she will try it. It sometimes backfires if she doesn't like it because she will never try it again, but we have had lots of successes.

Don't give up twowillbefine. It sounds like he is eating a variety of stuff so you are doing well. I used to keep a weekly food diary for Dd3 so at the end of the week I could see she had had a variety of stuff even if she only ate tomatoes on wednesday and cheese on thursday.

Good luck.

Ditto the roast potatoes, I make smaller ones and call them sunday chips! It all takes so much extra energy doesn't it - and expensive too. Glad to know I am not in this boat alone.

Credit to you for trying so many different foods for such a long time, sounds like you have come up with quite a few favourites along the way.

Im mum to a 12 yo who had a total food aversion due to being tube fed. Still has gtube but now also does eat and drink samll amounts.

Firstly let me say I know how hard this is - and we got NO help from professionals. SALT were called in but clearly had no clue; they gave me a leaflet that basically said it's not the parents fault. End of help!!

We tried everything - persuasion, giving him food but letting him decide if he wanted to try it and, yes, the shouting thing too. We weren't worried about him not getting his nutrition as the tube took care of that so to a certain extent the pressure was off us as well.

I can't say what changed his mind in the end. One day he and his Dad had been cooking and he decided to try some! We then had weeks where his diet was soley homemade tomato sauce - or even just tinned tomatoes on pasta. Then one day he DEMANDED a sausage......

So have patience.