Any advice on eating please?

[claw3]

My ds is 4.5 years old now. He suffers with modulation disorder, a sensory disorder. His diet consists of:

8am honey hoops with no milk
12pm 1/4 of chocolate spread sandwich no butter
3.30pm grapes,yogurt
6pm 1/2 chocolate spread sandwich
7pm honey hoops with no milk

This has basically been his diet for years, since he was able to eat.

Does anyone have a similiar problem or can offer any advice on how to add some new things to his diet?

Tiggi - He eats his lunch in the hall, very noisy i should imagine. Also packed lunches and cooked dinners share tables, you might be right, the noise and smell may well be putting him off.

If it comes to it i suppose i could ask for other arrangements, but i really, really didnt want him to be treated differently and further alienate him. At nursery the other kids were already avoiding him because of his little 'quirks'.

Its really hard trying to seperate disorder behaviour and him getting me at it to be honest! With my other two boys, if they didnt eat their lunch etc, i wouldnt give them sweets etc. But saying that i suppose they didnt have modulation disorder, for him every calorie counts!

If i put Pombear crisps and say a small packet of biscuits into his lunch he would eat that and nothing else. So im torn as to what to do for the best.

Regarding asking for other arrangements, perhaps leave it for a short while and if there is no improvement raise it with the school then?

It is really difficult to balance whether to give in or not with the food; I am afraid I decided long ago that I just had to get the calories in. At times of great stress DS reduces his diet to just two things-cereal and milk (and that has to be GF cereal, so his current favourite is cocopops). Nothing else, all day-cocopops for breakfast, lunch and dinner!

Right must dash, Go Diego Go has finished!

Will catch up later, thanks for all the helpful advice.

Tiggi - You are brilliant at pointing out the obvious to me, i keep forgetting about the smells and noise etc, really new to this sensory disorder. Thanks a million x

Morning Tiggi - Yes definately, im just trying to play it by ear for the time being.

I have the same problem, some days ds's diet is reduced to honey loops with no milk at every meal. He seems to have about 2 weeks of eating well (if you can call it that) then about a week of reducing his diet to honey loops. Yesterday for example he ate about 6 honey loops for breakfast and that was it.

Not letting him have sweets, cakes etc has been something i started when he started school, definately bad timing on my part, as you say very stressful time.

Im usually very laid back about food with him. As you say something is better than nothing, perhaps i should go back to old routine.

Morning claw!

Yes, I would definitely stick to the old routine until things have settled down. How did your DS go off this morning?

I asked my DS where he ate his lunch yesterday-he said he and one of his friends ate it outside as usual (and yes it was below freezing all day here yesterday!) But he would rather do this than eat inside-he does not feel the cold anyway, to be honest.

It will not be a good day for him today-his class apparently have a supply teacher (his teacher must be on a course, but really, it is their second day back and already a disruption to routine!)

Does your DSs school seem clued up as to his needs?

Oops-just saw the thread you started this morning!

I see your school/DSs teacher are not clued up at all!

I have not read the other thread properly yet, but does your DS have an IEP (Individual Education Plan) in place yet?

Hi Tiggi - No he doesnt. Apparently it is too early, the school need to get to know him and wont be set up until about Feb!!

What they dont seem to realise is that even hanging his coat up in the tiny cloakroom with people pushing pass him, could be a real big problem for him. Someone on the other thread has suggested putting together a 'needs passport' i love that idea. The school already think im a overprotective precious mum, so what the hell. If they need telling, so be it

You have to develop a thick skin and a loud voice to make sure your child's needs are addressed I'm afraid!

Who did the assessment and diagnosis of your DS? Has the school liaised with whichever professionals are involved?

They should get an IEP in place as a matter of urgency. If I were you I would ask for a meeting with the Senco, your DSs teacher and possibly the head to make sure they are all aware of your son's needs. And don't let them fob you off or make you feel bad-they will probably try to. I was in tears many times when I left the school during my DSs awful year 1.

The senco at our school refused to accept there was any problem until my DS got his official diagnosis of Asperger's. So be prepared for a fight!

Tiggi - 'Rocky' is my middle name, he he!!

Im going to make an appointment to see SENCO next week.

He has been assessed by just about everyone, we started with GP who fobbed me off. He had to see Dietician when he became anemic and its kinda snowballed from there. He passed the buck to Paed, who then referred to OT.

Has the OT sent a report to the school yet?

By the way, the IEP should include measures to ensure your DS is able to eat and drink in school, since this forms part of his difficulties. The school should take whatever steps are necessary to enable him to eat and drink (ie provide a quiet place, encouragement to eat etc).

My DSs teacher last year discovered that he became very difficult and unable to concentrate during the latter part of the morning. This was greatly helped if she gave him time and encouragement to have a snack midmorning. So this is what she did and it worked very well!

Tiggi - I suppose ive been a bit of a coward really, not wanting to get off on the wrong foot with the school, teachers etc. Start creating the moment he starts school, i really did think, i could just see how things went and if a problem arouse then deal with it. Bit niave of me really.

The OT is in regular contact with the school by phone, she is visiting on the 19th Jan. Its all been a bit informal to be honest. My ds doesnt even have a DX on paper yet.

Tiggi - Must dash off to Asda's for pants, need to get back in time for school run.

Will check in later, i cant thank you enough for listening to me and giving some really helpful advice.

I saw your note on the other thread about boxers. My DS hates clothes! As soon as he comes through the door from school or when we have been out, he takes everything off apart from his boxers!

He has always been like this. Socks are a nightmare because they never "feel" right and he takes them off loads of times before he is happy. I have had to disgard so many new clothes because he dislikes the feel of them. It's so frustrating-particularly on school mornings when you are running late!

Hi Tiggi - back from my mad trolley dash! no cotton boxers in Asda, will have to try another shop.

Ds used to run around totally naked and he hated shoes, he used to take them off the minute he sat down, whether that be in the car or a restaurant! We have made lots of progress come to think of it, he will tolerate clothes now, just not pants! In nursery it wasnt really a problem, no one saw he wasnt wearing any, but at school he has to get changed for PE etc!

We have tried the tight fitted jersery material boxers, he ends up looking like a sumo wrestler after a loo visit, which is fine when at home, i can straighten him out.

I then tried the little pants that are like speedos, which are fine again until a loo visit, then they get twisted and drive him insane. Im now after some loose fitting cotton boxer.

Hi there;

Sorry didn't see this before and know the thread has moved on, but going back a bit I recommend this book to all and sundry - yes it's about eating problems for kids with ASD but I think applies more generally and it's very practical. We managed to borrow a copy from the local learning disabilities nurse.

Thanks R3d - I read that book about a year ago after Coppertop suggested it to me. I did try some of the suggestions in there, the food timer is one i remember, but not much success im afraid.

Oh bum. Well, it was worth a try!

I had a very depressing conversation with the dietician on Monday - basically saying "give up". Not that she put it like that, of course, but that was the definite gist.

R3d - Most definately worth a mention, it might well come in very helpful to someone else reading this thread

The dietician my ds say was rubbish, he basically told us it was a behavioural problem, not a physical one and showed us the door!! He also told me not to give my ds the foods he usually ate, saying if he were in Africa he would have to eat rice! After a week of my ds eating sod all and losing weight, he did an about turn and told me to let him whatever he wanted to eat and showed us the door.

What problems is you DC experiencing with food? Any other problems etc?

we have ishoos with clothes and shoes too although again like your DS we have made progress - DS3 is now wearing proper leather shoes for the first time since the summer he turned two, so where there's life, there's hope!

Hi Claw

You have done well with your DS and the clothes-mine is OK wearing them when he is going out (as long as they don't itch, aren't too hot etc!). But indoors he just hates them .He tends to get very hot-he hates the summer because of the hot days (as do my other DSs with Asperger's).

How is school going?

Sixspot - Oh yes, buying new shoes was a nightmare.

And wiping his own bum, is a no no, after attempting to and getting some on his hand, shock, horror!

Looking back, we have made great progress, im not quite sure how to be honest!

Well, like a lot of our kids, DD1 is "a bit complex" and I find generally (OT, SALT, dietician, whoever) that if you have a classic single-issue kid they'll agree to try a standard approach which has worked with that profile before. If you have a multi-issue kid it's like a big tangled ball of string - they don't want to just get hold of an end and pull because they think it will take a huge amount of time with no guaranteed result at the end. So you can have 2 kids displaying the same behaviour but they will refuse to treat yours.

DD1 has a couple of conditions which mean she has about 1/3 of a brain working properly and is developmentally at about 8m, though language/social is most impacted. Though the cause is different she has a lot in common with a child with ASD, a diagnosis her paed sometimes tags onto her notes: including eating issues and sensory (tactile defensive, sensitivity to hot/cold skewed). My view is that we should try to tease out the ASD-style part of her eating issues (to do with texture and trying new stuff and setting up random rules for what she will eat) and treat it as if she just had ASD, which is behaviour our local feeding clinic does deal with. But because she is "too complex" and it's so hard to work out what her rules for what she will and will not eat are (won't communicate, can't negotiate) dietician is basically refusing to try. She says just feed her what she will eat (doing that in the past has got us down to only eating weetabix, so bollox to that) and supplement it to make sure it will keep her healthy. I'm just trying to keep the dietician engaged at the moment - she does seem to be a good one really - and see if I can soften her up over time.

Morning Tiggi - I let him ride his scooter to school this morning just to get him out of the house. Still no improvement on the eating/drinking front. Just spoke to the school, the SENCO isnt in today, but luckily enough it was a dinnerlady who answered the phone!

She tells me he sits away from where food is being served on the outside edge of the hall. She is going to make of point of sitting with him for a little while and give him a bit of encouragment.

claw-I notice on the other thread that your DS may be G and T. Mine is gifted in Maths-he has extension lessons in a very small group with a teacher who comes in especially. He really enjoys this.

However, as you suspect, certainly in our case, it has made it virtually impossible to get a statement. The school applied last year and were turned down. I am probably going to apply again myself, but the SENCO is very sure we will not get one as DS is so able, despite the fact that he is not meeting his full potential. My local authority is notorious for not giving statements though, so you may be more successful.

R3d - How old is DD? Do you have any help from OT? My turn to suggest a book The Out of Synch Child?

What does your DD eat, other than weetabix?