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SN children

Here are some suggested organisations that offer expert advice on special needs.

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Original poster

aaarrgghhh!!!

17 replies

silverfrog · 29/01/2009 13:26

I have just had a phonecall from dd1's school.

They gave her jelly for lunch.

Just what part of the sentence "dd1 is not to have any gluten products, dairy products, gelatine, MSG or any flavourings or colourings (both artificial and natural)" - as written on her notes - do you think they misinterpreted?!

FFS!

It is an autism school, you'd think they would know to respect dietary differences.

The head apologised and said they would be seeking clarification from me as to what dd1 can eat. Well, anyhting that excludes the above, really.

She also said she hoped that dd1 wasn't up all night - least of my worries, tbh. Last time she had jelly she turned into a screaming biting monster

here's to a peaceful afternoon, as i won't be getting any rest once she's home...

OP posts:

amber32002 · 29/01/2009 13:42

Oh hell.

If that had been e.g. a serious a nut allergy and they got it wrong, she could have been dead.

You'll be needing a strong cup of something later...

TotalChaos · 29/01/2009 13:43

oh dear. At least the head is taking it seriously so hopefully this shouldn't happen again. Hope tonight isn't too grim.....

Original poster

silverfrog · 29/01/2009 13:47

well, quite, amber.

And apart from the short term effects, i hate to think about gut damage (which she already suffers from) - she will be uncomfortable for a few weeks due to this.

And just as we had got to the end of a difficult month with her too

The thing that bugs me most is that I have offered several times to send in food for dd1 (anxious mother ) but they assured me they were on top of food issues...

I have the Bailieys on standby - just need to check the freezer for ice

OP posts:

TotalChaos · 29/01/2009 13:50

oh the poor thing, it hadn't hit me there would be more long term consequences to them getting the food wrong.

5inthebed · 29/01/2009 14:24

Oh dear! Not exactly the best thing from a school that should be on their toes when it comes to dietry requirements.

Maybe you should go out and buy some ice, it'll be there ready for when she gets home

Deeeja · 29/01/2009 15:43

oh, that is awful!
Poor wee thing!

Original poster

silverfrog · 29/01/2009 16:05

well, she's home, and bouncing off the walls ("I had jelly for lunch. at lunchtime. jelly. I had jelly at lunchtime. at school for lunch. yummy jelly. yummy jelly for lunch" has been repeated on a loop for the last hour or so)

she is currently insisting it is teatime (probably in the hope of more jelly , and keeps asking me what i am cooking.

at least (and this gives me some small pleasure) school will get a taste of her come-down behaviour tomorrow. she doesn't go on fridays, but tomorrow they are running a course, with childcare provided, so i get to drop her off and let thm deal with it

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amber32002 · 29/01/2009 18:21

Oh my! Definitely a strong cup of something required !!

TotalChaos · 30/01/2009 17:21

how's she doing today?

Original poster

silverfrog · 30/01/2009 19:20

yesterday afternoon was a complete write off! she had 3 wee accidents (unheard of - she has been accidentless for a couple of weeks now, which doesn't sound much but she has only had one accident a day since we started training her)

She was up until 11 last night bouncing off the walls (usually straight to sleep at 7), then up again from 6.30 this morning.

She was a terror all morning (lots of screeching), but the worst of it was lots of deliberate winding up of her sister...

She was much better this afternoon, thankfully, and now it's the weekend, so at least dh will be here too.

Actually, she was really good this afternoon, and, i am told, looked after her sister well while I was on the course at school, so I am very proud of her

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hereidrawtheline · 30/01/2009 21:21

That is really irresponsible of them. There is the obvious that you have said she should not have it so she shouldnt!!! Also though, we are vegetarian. I would be furious if my DS had meat products in school. It isnt that I think it will kill him but it is my choice and I have chosen to raise him this way.

At least the Head was suitably sorry for it. Does she understand the link between your DD's behaviour and certain foods?

How do you think I can go about finding out what foods may be aggravating his ASD? He doesnt have meat/fish or any sweeteners.

Original poster

silverfrog · 30/01/2009 23:48

the first thing I did in a dietary intervention way was to contact Sunderland ARU

They offer a urine analysis to check gluten and casein intolerance. They are really helpful and easy to talk to.

dd1 tested way off the scale (the research unit were surprised how high the result was) for gluten susceptability, and also reacts to casein.

we excluded both from her diet, and saw immediate beahviour differences, as well as longer term improvemnets.

this book tells you a lot more about gluten/casein free stuff, and there are a couple of others too.

we now also supplement dd1 with loads of stuff, but that came later, under guidance from a nutritionist who specialises in ASD issues.

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hereidrawtheline · 31/01/2009 00:30

thanks silver I will look into that. Its funny as a vegetarian you would think cutting things out of a diet would be normal for me but we've been veggie so long that it just seems the norm. The idea of checking packaging for a whole other set of stuff is daunting but of course I will do it if it is needed.

Original poster

silverfrog · 31/01/2009 08:44

it is daunting at first - I was a loony no sweetner/flavourings/colourings typ person anyway ( pfb alert - dd1 only had homemade organic food until she was about 2 ) but it still worried me.

But once you get into it it's easier.

Does your ds restrict his diet at all? drink buckets of milk, or crave bread/cereal? Part of the theory is that the gluten and casein cannot be digested properly, and the by-products that remain are addicitve (opiate-type substances). So as the child eats gluten/casein, they get a high from it, and as they digest, the high wears off, leaving them grumpy and irritable and searching for the next high (hence the cravings).

Do a search on here for Sunderland urine testing, or GF/CF diets and you'll get loads of info

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5inthebed · 31/01/2009 09:28

Thats really interesting about the milk SF as ds2 goes through stages of drinking loads! How do you get a urine sample from a child in nappies though?

Original poster

silverfrog · 31/01/2009 09:40

you canget a kit (you can get them from your doctor's or hospital. I think Sunderland sent me one as I asked, but can't remember. you can get them online as well, will look up the link in a mo)

basically, you have a couple of options. If you think it is likely to result in success, you can chase around with a potty hoping to catch the wee.

or you can use what looks like a sanitary pad, but full of cotton wool instead of gel stuff. you put a nappy on inside out (so it isn't absorbant, and so the chemicals don't contaminate), and stick the pad to the nappy. when your child has wee'd, you then either squeeze out the wee into the collecting pot, or use the syringe to suck it up and squirt into the pot.

the most stressful bit each time for me has been getting dd1 to wee - she is expert at holding on

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Original poster

silverfrog · 31/01/2009 09:48

Ok, the link for the nappy kit is here, BUT the site I got it form (TreatingAutism - lots of biomed info, very good site) also says this:

"Suppliers of the Newcastle Sterile Urine Collection Pads which fit inside nappy to allow you to collect the urine for testing. Item not available on web site - but ring 0114-229-3399 and ask for Marion Ratcliffe"

this is where I used (can't remember when though, as I am sure I got sent the kit as part of the ARU pack), but dd1 has had a few other urine tests along the way.

It is worth asking at a chemist or children's ward - the kit cost about £1.50 iirc

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