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SN children

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

Original poster

Friday night chat...

37 replies

signandsmile · 02/09/2011 17:50

Hi all, how has the week been? ds has done two (short) mornings at school and was saying he 'had a nice time'. so that's a bit fabby.... Grin

I may have (finally) pursuaded (nagged) dh into agreeing to laminate floor and Wickes have one that's 40% off and not too slippy. (Picture sign and dh surrounded by strewn shoes, leg braces, padding etc in Wickes trying to slide on the laminate floor samples to see if it is 'too slippy without shoes' for dh. Grin

dh and I went out for brekkie too yest while ds was at school, so that was nice too.

ds has decided his 'special school clothes' are his "nudi-forn" which is what uniform will be in this house from now on Grin, the okey cokey is already the "ottie toatie" Grin.

OP posts:
hazeyjane · 02/09/2011 21:18

He is just going to have 1/4 of a patch, the dr didn't give me any tips on how to cut them, I wanted to avoid having them, because I heard they can affect swallowing and make the eyes sore (ds doesn't blink much, so I thought they might get really sore!), but if he is at risk of choking, then we will definitely give them a go. The dribbling seems worse than ever atm, today I changed his top and bib 5 times, because it was drenched! That is very scary about the sucion thing, can I ask what it was like if she she started to choke in her sleep? Ds went rigid, with his jaw clenched, his throat distended, he was very sweaty and cold and his eyes were open and bloodshot. The paed thought it more likely that he was choking than having a fit.

Justa, I hope you have a fabulous day tomorrow.

madwomanintheattic · 02/09/2011 21:34

well, she didn't have a gag reflex tbh, so she didn't do the whole choking thing, just very quietly turned blue if it pooled in her throat and cut off her airway - until the sats machine starting going mad. urgh. sorry. fortunately it seems a long time ago now, but it's still awful to think about! must have been scary for you too - have they done eeg thingy? dd2 hasn't had any szs for a loooong time either, and is off all her meds. we had a sleep system thing which helped - she couldn't sleep on her back for the pooling reason - she had to sleep propped and supported on her side, and with the head of the bed/ cot elevated.

maybe they have changed the patches then - we used to have to cut it like a polo lol, to approximately a 1/2, as you couldn't just snip it half to make a half-circle. something about how the meds were dispensed... i think another side effect is really vivid dreams/ hallucinations - rare but worth knowing! Wink we had six months of night terrors with dd2 as well. she's a joy, really. Grin

BlackL · 02/09/2011 21:57

Hi Indigobell,
DS has struggled with tummy problems for years and never properly potty trained (no 2s) He was taken off diary 8 weeks ago and never looked back! He now makes it to the toilet!! I gave him some diary last week and he had an accident and runny tummy! Just waiting for appointment with dietican to c next steps.

Tiggles · 02/09/2011 22:45

Hello All, first time I have ventured on the Friday thread :)
Started a new job a couple of weeks ago as DS2 is starting full time school on Monday Shock. DS3 is going to go to nursery full time, but unlike my other antisocial children he is desperate to go and runs in, rather than screaming and clinging to me!
Felt slightly sick earlier in the week when heard DS2 is going to be assessed "ASAP" for ASD (he has been waiting to go onto the school team assessment waiting list until he was officially at school, as shorter waiting list than preschool team).
House sale looks like it might be off :( Been on the market nearly 4 years, had so many offers and they all fall through. Accepted one over 2 months ago and nothing much heard since from the buyer.
DH has been SAHM dad over the holidays since I started work, think it has been a bit of an eye opener to him.

Hope everybody's DSs with dodgy tums are better soon.

StarlightMcKenzie · 02/09/2011 22:53

Hi LMG, - they're all in bed Grin

CardyMow · 02/09/2011 22:59

My brain is melting trying to write letters for my friend in between bf'ing DS3 who has decided he is going to feed every 20 mins tonight. Not quite sure why - he's 7mo, should be past that by now!!

I've also got to photocopy about 200 pages of stuff for her, as she has been told that now he has a firm diagnosis of ADHD, she needs to do a new DLA form??!! She already gets DLA for him (not sure what rates though). So she needs copies of bloody everything for the DWP. Thing is, she is still waiting on ADOS testing for Aspergers/ASD for her son - Is she going to have to do the DLA forms AGAIN when that's been done? I have 2 dc with asd myself - if her son isn't on the autistic spectrum, I'd eat my own shorts!

IndigoBell · 02/09/2011 23:01

BlackL - you need to read the GAPS diet as well. It suggests that these tummy problems all our kids seem to have is the cause of their SN :(

That they can't digest food properly, then it leaks into their blood stream, then that causes ASD, ADHD, Dyspraxia, Dyslexia etc.

I'd be less inclined to believe it if it wasn't for the fact that both mine and most everyone's DC on this board appears to have tummy problems :(

StarlightMcKenzie · 02/09/2011 23:11

Loudlass, what you would be wise to do is less of the 'donkey' work yourself and more of the researching agencies, charities, even LA personnel that can help your friend.

There are a number of charities that will send someone round to fill in your friends DLA form for her. Ask at the CAB or phone your LA and ask if they have any agency called 'monetary advice' or something similar. Some SN HVs can fill in the forms too, or may be able to point you to someone who can. Or perhaps the local Children's Centre knows.

Nothing is standard or written down often. Sometimes it is just a matter of finding someone who knows something.

Once she has had someone fill in the form for her, she will at least have a template.

Those letters you are writing. Try not to send them right away. Try to get someone to look over them. And on your second looking try and take the anger out (Even if you didn't think you put anger in). Always write as if a tribunal is eventually going to be reading the letter and that you are going to want to sound credible and reasonable to a 3rd party.

CardyMow · 02/09/2011 23:16

SN HV...hahaha even the UNDER 5's can't get an appointment with her without a 1 year wait on a list, let alone a 7yo!

We are going to go to the childrens' centre the day they go back to school. The CAB haven't got anyone education trained in our town at the moment - OR disability trained.

She has already done the form once, she is doing that by herself, she just doesn't have a printer, and mine is a copier too, hence me photocopying them for her.

The letters are on one of my other threads. Maybe you could have a shufty.

www.mumsnet.com/Talk/special_needs/1292173--Wasuup3000

CardyMow · 02/09/2011 23:19

Oh - and our SN HV...NOT a very pleasant lady. I have had the misfortune to meet her twice. In over 13 years of dealing with two different SN dc of my own.

madwomanintheattic · 02/09/2011 23:25

yy indigo. GAPS is very... plausible... at this rate we'll be able to have our own GAPS thread!

IndigoBell · 02/09/2011 23:34

MadWoman - I'll start a GAPS support thread :)

I hope that my usual pragmaticism will be enough, and we'll be able to get some benefits without doing the full diet.....

Anybody whose kid has a dodgy tummy is welcome to join.......

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