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?

ooops Sync even

Cross-posted! Drinking has caused a lot of problems for us. DS was going all day without a drink-I picked him up one day last summer and he had not drunk all day. Trouble was, it was about the hottest day of the year, he had attended an after-school football club so was running around in the heat, and it was 4.30 when the club ended. Can you imagine, absolutely no drink all day and then running around in the heat as well-and he does not even drink in the morning as he will not drink with breakfast.

After that I spoke to the teachers and got them to remind him to drink but to be honest this was a bit hit and miss.

I discovered he was worried about the bottle top being contaminated (he worries about things being dirty a lot) so bought a bottle with a covered top. This seems to be working at the moment.

Tiggi - Remind me how old is your ds again?

It often takes me forever to get to the bottom of things with my ds, if at all. Im hoping this will get easier as he gets older and is able to communicate and understand his feelings a bit better.

DS is 9-he will be 10 next month.

It is still hard to get to the bottom of things sometimes, and reasons for things seem to change as well.

For instance last year he was not eating his lunch and it eventually transpired that he was doing this to avoid using the school toilets. (He had realised that you often need to use the toilet after you have eaten.)

His phobia of school toilets went far beyond the norm and I ended up having to go and pick him up if he needed to open his bowels, let him use the toilet at home and then take him back again. He then started eating again. The clinical pyschologist at the CDC did some work with him about the toilets and we went through series of strategies including using the staff toilet and he will now use them if he absolutely has to-he would still rather not though!

Tiggi - Thats interesting. I know ds is avoiding using the toilet, i thought because his pants get twisted and drive him insane.

I dont think he has made the dont eat lunch -then dont need the loo - then pants wont get twisted connection.

I havent put any pants on him today, he doesnt have PE, so no one will know. Will be interesting to see if he eats any lunch today.

How their minds work eh!

Ds has tended to have a lot of anxieties over the years which have at times been quite complicated. He tends to take them to a logical conclusion!

I buy DSs boxers from Tesco by the way-they have cotton ones there. I tend to buy them several sizes up so they are nice and loose-he won't wear them tight.

Any luck with the lunch today claw?

Yay we have lift off!! he ate 1/4 of chocolate spread sandwich + yogurt and drank his drink. Left the Pombear crisps and mini jaffa cakes. I did say to him to eat his sandwich and yogurt first, then he could have the crisps and biscuits. Theres my logic out of the window as always. Ds's logic, is logic according to him, not the rest of the world

Now is that due to him not wearing pants or that the dinnerlady told me she was going to try and encourage him today!!

We will see, im going to leave pants off of him, except for on Wednesday when he does PE.

That is great news claw! Perhaps he is settling a bit now. Hopefully the dinnerlady will keep an eye on him and make sure he continues to eat something.

Hi Tiggi - Just back from OT, feeling a bit deflated. Just been told that Modulation Disorder isnt recognised as a DX in this Country, just 'as a problem'. OT assures me this wont affect the help etc ds can receive. But im not so sure, not quite sure what to expect A bit one step forward and two steps back.

Anyhow, how are things with you/

Has he actually been assessed for ASD's by a developmental paed Claw?

My DS was initially seen at the CDC by a paed when he was 3 because I was concerned about his handflapping. ~The paed did not pick up on anything then; nor did the next one who reviewed him a year later.

It was only when he was seen by a third paed when he was 5, and by now beginning to experience major problems at school, that it was finally considered a possibility he had AS.

Anyway, things are not too bad. DS was unwell yesterday-I think it was just the stress of being back at school, as I sent him back to bed and he slept all morning solid (most unusual!) He is much better today so back to school.

Glad to hear ds is feeling better today.

Ds has been assessed for ASD by a paed and this has been ruled out. He sees the pead every 6 months and they were bascially stumped as to what the problem could be. I have some experience of autism (my brother was autistic)and after reading lots, ds leaves more boxes unticked, than ticked, so to speak, i also dont think he is on the spectrum, but i could be wrong.

Paed referred to OT and she suspects Modulation Order, now this fits ds like a glove and there is no doubt in my mind.

Oh dear, what a pain it is not recognised as a dx. It is hard enough getting help with one-as I said, we have been unable to get a statement. DS gets no one-to-one help at all .

Tiggi - Although i would add apparently it is practically unheard of for a child to have sensory issues, without having an underlying/overlapping problem, so perhaps something is being missed.

Someone suggested the IPSEA website to me yesterday for help with getting a statement, i dont know if you have already tried this. Im by no means an expert (as you might have already gathered!), just passing on the info

Thanks claw-yes thank you -the Ipsea website is very useful. Hoever, my LA are renownned for not giving statements.

I am going to try again, applying myself this time (the SENCO did it last time).

DS will be in his last year of primary school next year and the whole secondary application process would be so much easier with a statement.

But I know I will be in for a real battle.

renown

Hi Tiggi - Im finding it so frustating at the moment, just trying to get info passed from one person to another is an up hill struggle at the mo. I dont envy you. Good luck

How's it going this week claw?

Hi ya Tiggi, im still in the process of trying to put a document together for the school, so they can understand ds better. I think i have completed, then i think of something else i should add. Didnt realise just how many problems ds had until i started to write it all down!

Dentist visit yesterday, ds is being referred to community dentist, has a black front tooth which he has killed the nerve in and she is worried about the wear on his teeth caused by grinding. One of my other ds's 12 is being bullied in school by 16 year olds, so had that to deal with too.

DH is being totally ignorant of ds's disorder. Other than that life is great

How are you, are you having a good week so far?

Hi Claw- I am having a pretty busy week like yours by the sound of it!

I had an appointment at the CDC to discuss strategies for dealing with DS5's obsessive handwashing which is one of the main problems at the moment.

Whilst there I discussed the statementing issue and they contacted the SENCO about it afterwards, so will have to go in and discuss it again at the school. I am determined to go ahead with the application myself this time even if the school are not keen because I really do not feel his needs are being met.

Also have problems with DS4 who is 15 and not doing any work for his upcoming GCSEs, so have had numerous appointments at his school about that!

Other that that, everything is fine here too !

I have a 15 year ds too and had the same problem with him recently too, he had fallen behind on some course work and had to catch up during the last school holiday.

I was expecting this special needs malarkey to be all cut and dry, didnt realise just how ongoing it would be, thank god for Mners!

You have 4? all boys?

I actually have 5, and yes all boys! Mine are 27, 26, 20, 15 and 9. What do you have?

My 15 year old is being an absolute nightmare. He is very bright (exceptionally so in Maths like DS5) but he just will not do the work. He has the teachers on his back (and mine!) all the time-he still has loads outstanding.

School are being very supportive though, but I don't think he is going to do nearly as well as he should. But I really don't know what more I can do.

I have 3 sons, 15, 12 and 4. I also have a step son who visits at weekends. So 4 in total.

I had no first hand experience of SN's before now, although i did have a brother who was autistic and various other problems. It has opened my eyes for sure, it is a struggle and ive only just started!

DH is in denial, he doesnt want to listen to anything i say about my ds's disorder and refuses to read about it. He keeps telling me ds is a perfect, normal, happy boy and he doesnt see what all the fuss is about. No support whatsoever, so MN is a real life line for me and very comforting at times.

Sounds like you are doing all that you can and handling it really well.

I think what you are finding with your DH is a very common experience claw. Mine was in denial at first too. I left a lot of literature around for him to read and he came along to the assessments and gradually he took it on board.

Our situation is a bit strange in that DS5 got his dx first when he was 6; we then realised after learning so much about AS that DS3 certainly has it too. He had been assessed when he was about 8 and dx with dyspraxia, but back then AS was not really known about too much. He was dx last year days before his 18th Birthday.

We are also pretty certain that DS1 and DS2 are AS as well, but have never been assessed. It is even possible that DS3 may be too, but the jury is still out on that one!

It seems ridiculous that we never realised when the older boys were little, but because mine were all the same I just thought that was how boys were! (and none of them are as extreme as DS5). And as I say, AS was just never thought about in those days (it did not even exist as a DX I don't think).

You have hit the nail on the head Tiggi, it hits you like a bolt of lightening once you start learning about the disorder.

It is really pissing me off to be honest, DH is more than happy to accept the G&T that is also suspected, proud of it in fact. But wont accept any imperfections.

Leave literature laying around for him, i could stuff it where the sun dont shine at the moment

He is currently sulking (argh i do love sulking in grown men) because im spending a lot of time finding out about ds disorder. He is feeling all neglected, bless

Lol-I hope the sulk does not last too long!

Seriously, though, I don't know why they find it so hard to accept when there is a problem. I suppose we just want to get on and make things better, or at least do as much as we can to help. I also found it reassuring to be as informed as possible about the condition, just as you do I am sure.