Dont know whether to be happy or not

[Claw3]

Had a meeting with OT from specialist feeding clinic and SENCO earlier this week, about ds's extremely limited diet and ds barely eating in school. He currently eats a quarter of chocolate spread sandwich (leaves the yogurt and grapes, although he will eat these at home) with adult supervision, without supervision he eats nothing.

It was agreed that we would attempt to get ds to try a school dinner. The plan was 3 weeks of ds just looking at the dinners, but continuing with packed lunch. Then asking ds to choose just one thing from the menu, something like chips which he already eats at home.

This morning SENCO comes over to me in the playground and tells me for the last 2 days, ds has been eating pudding ie cake and commented "so much for just looking".

Ds has no problem eating cake and i purposely leave cake out of his lunch box, as this is ALL that he would eat, given the choice.

So for the last 2 days, he has been eating just cake in school.

There are really not getting the hang of this. I dont want to be negative as they are trying, how do i approach this without upsetting them?

Blueshark, this is about school dinners, not packed lunch.

Ds takes a packed lunch to school and then school try to get him to try school dinner as well.

This also wasnt part of the plan that was set up, we were to agree a day that they would try to get him to eat something from the menu and i would leave ds's packed lunch in the boot of the car, and then deliver it to school after ds, just in case he refused to try anything from the menu.

Yes, sounds good. Perhaps phrase it that you'd like the school to reassure your DS that they would never give him a detention because of food

Im confused by the bloody plan, we made a plan, school havent followed it. No wonder ds is confused!

Lougle, i dont think he is getting confused, as i have seen the reaction to mash potato, he would cry and refuse.

But at times when he gets confused or especially sensory overload, he cant remember correctly. Its hard to explain. An example.

When ds was in reception he got hit in the face with a stick and poked in the ear, which caused cuts to both. The teacher reported this incident to me, so it totally did happen.

A year later and ds came home with a cut on his finger, i asked him what had happened and he told me the same boy who had hit him with the stick causing cuts had hit him with a stick again. The boy had left the school to go to another about 6 months previously.

So i know that this didnt happen exactly as ds described. Maybe another boy had hit him with a stick or maybe he had just cut his finger and remembered what happened a year ago.

Its also obvious from various assessments, ASD Outreach reported that ds has difficulty separating fantasy from reality. EP couldnt make sense of his informal conversation.

I dont have a leg to stand on. Sometimes it might happen, other times it doesnt. I cant go in guns blazing, just because i believe he has given a true recollection on this occasion iyswim?

claw - definitely explain how your ds is seeing this new development.

dd1 has some issues with food, but on the whole does ok. she eats what she eats, and since what she eats is eg lentil curry, I don't have too many worries.

old school insisted she have school dinners (and couldn't cater adequately for her diet - gf/cf, but that is another story)

dd1 started getting upset at lunchtimes.

they interpreted this as dd1 being upset because there was another child crying (sounds like lunch was a riot there!) - besides dd1 not ever being upset when she was allowed ot bring her own lunch in.

they started putting ear defenders on her, to help her cope with the noise.

dd1 is extremeylt defensive about her ears, and absolutely hated this.

she started to school refuse.

I talked ot them, told them to not put ear defenders on her, as she hates it ("oh, but she never says so" was the reply )

they continued doing so.

dd1 eventually got the idea, and ate all of her lunch, then immediately indicated she wanted the ear defenders off (despite there still being noise )

to me, this was clear as anyhting that dd1 thought she was being punshed for not eating, and so she did what they wanted - she ate the food (that she didn't like, and didn't want to eat)

I went ballistic, in front of dd1, and told them to never punish her in this way again.

they blustered about it not being a punishment, but they were ignoring how dd1 felt in all this (she had been complaining to me about "the hat" for soem time)

to ehr, it was absolutely a punishment, and she solved it in the only way she knew how - to eat something she had previously been refusing for weeks. she doesn't like potatoes, has never eaten them (will eat mash, though!).

it is completely valid to point out your ds' viewpoint on this - he is the important one in this equation.

wha tthey are trying to do is almost irrelevant, the main thing is wha titi menas to your ds. and if he sees it as punishment, then it has to stop (or if he thinks he will be punished for not agreeing, etc)

don't give them any let out with "he gets a bit confused". they know he has langugae issues, and his comprehension does not match his verbal skills.

that is why a clear plan is necessary, with your ds having time to process what might happen, and space to agree or disagree at any point.

Thanks Silver, i need to word my letter very carefully, as i dont want school to become defensive as last school did. Any ideas much appreciate?

I know for a fact that ds ate cake all last week, as school sent a list home of what he had eaten and SENCO told me. So he has reported accurately to me every day that he has eaten cake.

Ds gets very confused by names of things, especially food for example jaffa cakes, he calls pancakes. They may well have got him to try semolina or something similar in school and he thinks it is called mash potato

I will have to tread carefully. I need to report how ds is feeling and emphasis the feeling, otherwise school will feel as if im blaming them.

I'm sorry, I can't help you on the tactful front - I went ballistic, and told anyone and everyone that if they persisted in what I would term abuse (since it was a known phobia to do with her ears that they were disregarding), then I would have no hesitation in informing the LA they were not fit to practice as a school

I said all this in the main foyer, in fornt of parents there for pick up.

I was a bit angry (mostly because the whole issue of ear defenders had already arisenwith dd1, earlier in the year, so not only were they ignoring what I was saying now, but had totally ignored what was already on her file - namely that they were never to be used under any circumstances)

I told the TA directly involved she was not to override dd1's wishes on the matter.

I told the head that her food policy was dictatorial and pointless. and that if they could not cater adequately for my child I would bring a case under the DDA.

calm and controlled I was not.

worst of all, the head tried to tell me not to discuss all this in front of dd1, as she would understand, and my undermining the school was not a good idea. you can imagine how that went down

dd1 left the school the following week.

I understand your reluctance to upset the school - especially after what you went through witht he last school. but they ARE to blame.

they agreed to try a plan, and then have forged ahead and ignored it.

not only did they undermine the whole thing by giving your ds cake, they are now pulling the rug out form under him by changing the rules without prior warning.

I would go to town on the distress it has caused your ds. how he doesn't understand why he was allowed cake last week, but not this week.

how he felt forced to try the food (whatever it is - it doesn't matter if he has got the name wrong, it was a food he didn't want, and he was made to try it)

ther eis no way AT ALL that any eatign plan would push things that far on a first presentation of a new food.

do you remember when I told you about how we approached it with dd1? how she had to tolerate it in the room with her, then a bit closer, then closer, etc.

if she couldn't cope with it on her plate, she had to have it on a plate near her.

maybe had to clear it away and put it in the bin, etc. all this BEFORE she had to touch it in any way, let alone lick/taste/chew it.

and most of this came after weeks of playing with the food - painting oictures with it, spalshing it in water (me splashing if necessary) - squashing it with a fork - all in an area where she knew she wuold not be expected to eat i, ie away form the table.

i will ask you to attend my next meeting when i am not satisfied and set you on them!

Ds has refused to eat his Bob the Builder, i suppose this is how it will manifest itself, no control at school, so will control what i eat at home. Then we will get school are doing a brilliant job and you are doing crap, as usual!

Will write a letter tonight, once kids are in bed. Will try to write how school are not following the plan, in the nicest polite way possible, as i want them on side for statement appeal. Once i have statement, i wont have to tread quite so carefully.

claw, i would happily attend. I think it is probably easier to be rational and dispassionate if it is not your own child being discussed.

I really have no time at all for these so called well-meaning interferences.

you know your ds has issues with food.

you told them this.

you are seeking help, and with this support, you have managed to widen the foods your ds will consider eating, if not too stressed and anxious.

when you write your letter, make sure you mention that your ds has immediately become more controlling at home as a result of their meddling.

so, not only have they ignored and ridden roughshod over professional advice on how to deal with your ds' issues, but they have also undermined and sabotaged your efforts at home. it is important to mention this, because although the goal is to get your ds comfortable enuogh to eat at school, he has more meals at home/elsewhere than he does at school, and so if their efforts are ruining yours, yours must take precedence.

while it is not great that ds does not eat much at school, it would be worse if he refused to eat at home because he was getting cake at school - one meal of cake does not substitute for 2 meals which are resonably balanced at home.

DP is home from work and sorting out bedtime.

My letter so far:-

I am writing to inform you of the developments with regards to ds?s feeding plan, which was agreed between us and OT on X September.

The plan was for ds just to look at what was on offer for 3 weeks. Then to progress to choosing one thing from the menu on one day a week and for me to leave his packed lunch in the boot of the car and drop it off to school later, so that ds was not aware he was having packed lunch on that day and if he did refuse to eat, we had a back up plan to enable ds to eat. We discussed what foods would be less or more threatening to ds, with foods with a solid consistency being less threatening and the sloppier the consistency ie mashed potato being the most threatening.

I understand that when ds looked at the food, he was quite eager to try some of the cake and he was allowed to do so and did so every day last week.

What next?

Right SENCO approached me in the playground after school, while ds was standing there. She was very defensive.

Firstly she said could i not write letters like 'that' to the school.

I asked letters like what?

She said letters accusing the school of forcing ds to eat?

I said i thought i had made it clear im my letter that it was not an accusation, as i had emphasised in italic "ds FEELS"

She said she has checked with lunchtime supervisor who was with ds and he was not at all anxious or upset. He chooses what he eats everyday and is happy with the choice.

I asked whether he had choosen mash potato and she replied yes.

I asked if he had choosen it, why did he just lick it, instead of eating it. She said he do not lick it, he ate it.

At this point i started to smell bullshit. I told her that this is ds's eating plan and how he feels about it is important. Could she emphasis to ds that he would not be punished for not eating or agreeing to eat.

Could she also make sure that ds knows what the plan is, she said she would.

She left on a "if i have any concerns then to phone the school, do not write"

I left on a "i would have written in his home/contact book, but my concerns have not been replied since the beginning of term"

I said to ds in the car on the way home, Mrs X was saying that you were not upset or crying when you tried mashed potato"

He said "she wasnt there, i could feel crying in my eyes and on my face"

School are really not getting it. When i said can you explain to ds that he will not get a detention. She replied no one told him he would get a detention.

I replied im not saying that anyone told him, he would, he FEELS or THINKS this is what will happen, can someone explain to him this will not happen.

Head against wall, what to do, another letter!

oh claw,

tbh, I'd be withdrawing consent for them to give ds any food.

they do not Get It. they don't want to listen.

you were doing well doing things your way - I'd draw back to that position, consolidate, and work on ds at home - you can introduce the plan to him there. get his confidence and trust in foods he knows back.

remove the possibility for this to be upset by the school.

and then, in time, work up to him trying eg chips at school.

prime him all you can at home to ask for chips. and then tell the school he is allowed chips ONLY, and nothing else (if chips is what you work on, obviously!)

don't let them undo all the hard work you and ds have put into this.

Silver, i have copied the letter i sent to school to OT and CAMHS, will see what they say.

I literally feel like i am walking on egg shells at the moment. No one seems to be 'getting' me and what i say full stop at the moment.

Have just received a reply to the letter i sent to school, asking them how they are going to meet his needs without a statement, they are saying they can.

Again i dont know whether to laugh or cry. How are they going to met ds's emotional needs, they have offered to attend CAMHS review meetings is how

They are also planning on letting a social worker loose on me.

Just feel like the whole thing is going pear shaped again. The louder i shout, the more everyone seems to think im making the whole bloody thing up.

I cant win, if i tell them what ds has expressed to me, he cannot be believed as he gets confused. So i say help him, not to get confused then. He then doesnt have a problem and is coping well.

I feel like screaming!

Then school talk to CAMHS, feeding clinic and all other outside agencies and tell them ds is doing brilliantly. Then when i mention actually i dont think he is, im being negative and over anxious and need referring to a social worker.