Ds feeling terrified this morning

[claw2]

Ds has gone off to school this morning, he has a math test, PE (lesson he hates), a school trip and after school club.

He has 3 bags, school bag, PE kit bag and wellies in a carrier bag and can barely walk!

He hasnt been able to eat or drink anything this morning. He wont eat or drink in school either. He has sores on his lips, where he picks at his dehydrated lips.

Would it be unreasonable to email his TA and ask him to try and ensure that ds at least drinks something today?

Hi claw don't know who you seen before but could you maybe try and get a referral to great ormond street children hospital in London , they do an eating disorder clinic ,
They have a web page that you might want to have a look at , it's more then just about food issue , there whole bunch of people involved.

Hi Homework and thank you, I appreciate your support and sometimes it is helpful for me to just rethink my thinking, even if there isn't an obvious immediate solution iyswim. I sometimes think I have been dealing with it for soon long, I am not shocked by it, when really I should be shocked if that makes sense.

There are 2 specialist eating clinics Great Ormond Street is one and the other is Evelina Feeding clinic. Ds has attended the latter, this is where he was seen by OT. She was part of a 'team' a psychiatrist, Paed, SALT and OT. The 'team' thought it was a sensory issue, hence the OT having the majority of the input and assessing ds. They did provide a eating programme to ds's old school, it didn't work as school didn't implement the programme correctly.

The only time that ds's eating did improve in school, was when he sat on a table with other children with SN's, with adult supervision, in his old school away from others, then after they did not go out into the playground, but to the nursery to play.

Ds's eating initially improved. Then Ds got punched in the face and it made his nose bleed and he was teased by other children in his class for being a 'baby' and playing in the nursery. He refused to go to the group.

Ds says he doesn't eat in school a) he doesn't like the food b) he doesn't like sitting with people who are eating food he doesn't like c) If any food is spilled or on the table, he cant eat.

New school have tried cooking the food he eats at home. All he does manage to eat occasionally is dry bread. He had packed lunch for 3 years in his old schools and still didn't eat.

Also ds came home with scratches on his legs, which weren't there in the morning. He said he had been scratching loads in school and felt 'uncomfortable' because he couldn't 'sit right'. He named the lessons he was scratching in, which was most of the day, so ds's idea of 'loads' is pretty accurate.

I asked did he give a rating (on his anxiety scale) he said no, he didn't do a rating today. It turns out that ds decides when to do a rating and has to go and get the rating sheet from his tray. Which defeats the whole point of it. The idea was that an adult would ask ds to rate his mood throughout the day and give him strategies to use when anxious.

I feel like I am constantly on schools case, I wrote ds's IEP, I spelt out in his IEP exactly how the anxiety scale should be used and what strategies to use.

claw you've probably already done these things but mentioning anyway.
The OT sounds on the ball, so does he have a wobble cushion to help him feel more comfortable? Does he have some small sensory items that he has access to, the point being that he gains sensory control from these things rather than inflicting injury to himself? Basically replacing one sensory need with another that is more acceptable and less harmful to him.

I can see where school are coming from re: sititing in the hall but I don't think there will be some miracle day where suddenly he will be able to eat in the hall. The hall may be so stressful that's it's exasperating the sensory overload. Can he not come out again and try eating alone again, but instead of just eating alone, would he listen to music through headphones? Can he have a book to read? Then when things have settled he could try the hall again, using the music to block sound, the book to block visual and sitting alone in the hall. That way he will only have smells to deal with initially.

Again I'm sure you've done all these things so sorry if I'm teaching you to suck eggs

Polter, if ds did exhibit his anxiety through anger and aggression, I think school would take it a lot more seriously.

I suppose its just a case of being patience yet again, ds has seen the counsellor once and OT once, its just frustrating that ds has had the same problems for years and we are still at this stage. Still not schools fault.

Frizzcat sorry the OT I mentioned was from feeding clinic years ago. Currently a new OT, paid for by school, has assessed ds in literally about the last 2 days.

Also strategies used of coming out of lunch hall, were ds's previous school. This school have only tried cooking specific things for ds to try and get him to eat.

I have a million and one suggestions, very similar to what you describe which school could try and might work. However, I am already micro managing ds's needs and I feel like I am constantly on schools case and I will just have to be patient for a bit longer and wait for counsellor and OT suggestions.

You know what is like, a parent can suggest things until they are blue in the face, an OT or counsellor will suggest the exact same thing and it will be a brilliant idea and put into practise immediately, as if you haven't already mentioned it a million times already!

Same as me Polter I go in with evidence to school and medical prof's and then tailor the changes/therapy Im trying to get to ds needs.
I know what you mean Claw I also imagine the staff at ds school hide under chairs when they see me coming

Sorry claw , don't feel that I've helped you at all but just upset you .
You already tried just about everything you could do over the years , you correct that during school day it's out of your hands. As school not necessary willen to listen to a parent , but all the reports from previous assessment should be there if some just took time to read them , when he moved schools .

Oh no Homework you haven't upset me at all, I am so sorry if that is how it came across. Your advice was extremely good advice and exactly the right way to go about it and exactly what I would give to someone starting in the same position as me. You are not to know what I have/haven't tried already or the history!

polter at the moment all I have is an out date feeding clinic report and an out of date indi OT report. So school are kind of doing all they can, by saying ds not eating in school is totally unacceptable and getting an up to date OT assessment and paying for it, even though OT support of any kind isn't already in ds's statement.

Although there are some things they could do now which might improve on the situation, they have done everything I have asked them to do ie counsellor, OT and SALT input, let me re-write ds's IEP etc (even though they haven't quite got it) I cannot keep pushing and pushing for support and help which isn't even in ds's statement. My fault for not going to tribunal about his crap statement.

Frizz I think they do too! I don't think they have ever encountered a ds with difficulties such as mine or a mum like me! If I keep pushing, I risk making them look stupid and as if I am a 'know it all' who is never happy!

Yes sorry Polter, ds doesn't like to wear any kind of layers, he gets hot very quickly, another sensory thing. He wont wear a vest or t-shirt under his shirt or a jumper under his blazer. His bath for example have to be luke warm, feeling hot also invokes a need to scratch. He likes clothes which are thin and loosely fitted. Do you think the t-shirt would be suitable for a 'hot, loose' boy?

One last suggestion , could you not self refer back to clinic that was involved before , or ask to be referred back for continuation of previous problems .
Surely your gp should be willen to re - refer you back , they have copies of previous discharge notes .
Most places like this will have accepted re referrals as there will be a percentage of people who fall backwards and need further support.
No you haven't come across like that at all , I know how difficult things get and no matter how tough we think we are , when come to our kids and someone actually taken time to want to help can make us cry easier than when we being ignored.

Poor poor mini Claw and you. Nothing useful to add. It's all sensory stuff isn't it. He's extra sensitive to a hyper degree almost hyermobility of the senses. You are right, it's really hard for the school to tackle anything yet keep things within the realms of 'normal' for him. As a school bod it would worry me that a child wasn't eating or drkinkin and the latter is probably not helping his skin either. Could he just go into the dining room once a week perhaps to be 'good' and help tidy and stack chairs. The rest he could go to med room to drink a milkshake that perhaps he makes with you in the morning? I can see what the school is doing and in many cases that approach would work but not for miniclaw.

Cranial osteopathy and behavioural optometry (thanks Mumsnet) really worked for mine. I think it is a bit woo but have you ever looked into body brushing. Its all to do with retained baby reflexes that leads to sensory stuff. May be a load of bollocks but just a suggestion.

Sending you honking.

Homework, at the moment he has just had SALT and OT assessment. Also just started counselling and he has been re-referred with regard to his eye disorder. An awful lot of assessments, he doesn't like assessments and these too can cause him a great deal of anxiety. This time last year, he was refusing to take part in any assessments and getting very distressed. I am a bit reluctant to re-refer due to this and also I feel it would just be duplicating the OT assessment he has just had a few days ago. I also doubt that their advice or programme would have changed (it has never been implemented). So they would reassess, just to provide the same input, just so it is up to date, its madness! All they need to do is implement the recommendations made previously! I am hoping OT who assessed a few days ago, should be able to provide strategies, so should the counsellor.

flapping yes it is all sensory stuff. We did try body brushing a few years ago. I also had a sensory diet which I did with ds at home. It wasn't much use at the time, I think maybe due to everyone not working together. Ds needs to have strategies at home which are carried over into school and vice versa to make this work I think.

I feel I have provided school with enough suggestions for now, I don't want to become overbearing and I need to sit back and let the 'professionals' have a go.