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Goose and Carrot 7th March 2014

(547 Posts)
SallyBear Fri 07-Mar-14 18:00:08

Evening all!!
Lovely sunny day, has raised my spirits. I'm looking forward to the weekend. DS4 is out with his carer; cinema and then he's going swimming. The school have kindly opened up the hydrotherapy pool for him tomorrow.
I had my first proper chat about the new Governor role. They are going to send me on an induction course. Lots to read re. Policies and previous minutes.

SummerRain Fri 07-Mar-14 18:09:47

The nice weather has been a welcome relief hasn't it... Everything always seems a bit more manageable with the sun shining.

I hope ds4 has a lovely time tomorrow. Congrats on the governor role btw, I missed that bit of news!

ouryve Fri 07-Mar-14 18:22:33

Well, the weather was a problem for us, today. DS1 didn't even complain about the sun in his eyes (it was quite painful) because he was too busy complaining about the biting wind that we were walking against. Of cours,e he refused to even acknowledge that he had a coat to put on, insisting that his fleece was his only coat even if it wasn't a very warm one. hmm

I had ear ache by the time we got home and it wasn't from the wind.

ouryve Fri 07-Mar-14 18:30:47

DS2's words of the day are bigger, thinner and sheepdog grin

And, now we have starfish grin

Galena Fri 07-Mar-14 18:31:21

Just marking my place - off out in a few minutes to practise a song I'm singing as a steward at a community choir festival at the end of March... Wish me luck!

I went along and volunteered at a parent & baby play session at the children's centre today. There's a puddle of goo where my heart used to be smile

Really starting to build a rapport with the staff and even a couple of the children - loving this! I'm hoping to one day work with children with SN within the early years environment, I think smile

hazeyjane Fri 07-Mar-14 18:33:37

Have just caught up with he other thread

thanks for Moose, Claw and Summer - I am so sorry for the hard times you are all having.

cbvcvvccccccccvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvnbhbhnjb bbbbbbbbbbbbbbbbbbbbbbbbbbbbbbbbbbbbbbbbbbbbbbbbbbbbvvvvvvvvvvvvvvvvvvvvcvvccccxccccccccccccc

Ds has just added his contribution ^^

Well done Mini Galena!!!

Weather has been lovely, had a lovely walk with ds today...a slow one after his fall yesterday, he really is a wibbly wobbly walker.

The advisory teacher came in to observe ds and write her report for statement - the senco said she was very impressed with progress ds was making, and just how well he is doing. This of course should be marvellous, except I instantly panic that the report is going to be too positive for the statement. She rang earlier and said ds would not cope in ms, needed to be in the slu and a statement, which is good (well it's not obviously, except in the topsy turvy frame of mind that you end up in, when applying for a statement!)

ouryve Fri 07-Mar-14 18:35:20

Lunchbox, cowboy grin

thirbday! So he does sometimes get it wrong!

ouryve Fri 07-Mar-14 18:39:57

It's great that he's progressing so well with the help he's getting, Hazey. And, if you think about where he was in September, there's no way he would have come so far without the right support. It's good that the advisory teacher is recommending a specialist unit, too - that would hopefully carry a lot of weight.

moosemama Fri 07-Mar-14 18:48:17

Very well said mini-hazey. Couldn't have put it better myself. cake for you. smile

Loving your ds's words of the day ouryve. I have a bigger, thinner sheepdog - he's a part Deerhound Lurcher with a good chunk of Border Collie in his mix! grin (Just tried to add a picture of him, but it's not letting me for some reason. hmm)

I am feeling a completely inappropriate and weird sense of calm after all the phonecalls, emails and chaos today. I know it's probably the calm before the storm and dh and I are in for a stinky weekend of paper pushing and evidence gathering, but I am determined to try and let it go - for this evening at least.

youarewinning Fri 07-Mar-14 18:51:11

Mooses, summer and claw. So sorry everything is some hit ATM. sad

Well done mini galena. That's amazing.

Ouryre - your boys like a walking dictionary ATM!

Hazey - tell your DS Hi and welcome to the thread!

DS ok today - I know he's struggling as he's gone into quiet and passive mode. I'm awaiting the inevitable but really talking ATM whilst he's so receptive.

StarlightMcKingsThree Fri 07-Mar-14 18:52:51

Hi all,

At meeting to vote in my role as SEN Governor, there raised a problem that the SENCO didn't want me as a parent of a child with SEN. Preferred someone 'impartial' apparently.

God knows where we go from here. TBH don't mind either way because I'll always raise SEN as part of anything I do regardless because imo it isn't something separate or an add on.

StarlightMcKingsThree Fri 07-Mar-14 18:53:58

Baby ds finally got his referral to a SALT with a 9 month waiting list hmm

signandsingcarols Fri 07-Mar-14 18:54:07

hi all, well the kitchen is done! the builders left last sat aft and we have spent the week hoovering and wiping brick dust and filling the cupboards, will post a photo if I can organise it.
now got the lounge to re-dec as the new doorway has been cut into one wall and another wall has been built (to change layout) was a bit more than the quote (but we did change a couple of things) so will have to save again for the downstairs loo, sad but then again ds does need some recovery time fromn all the changes, so maybe not such a bad thing....

and today dh's wheelchair arrived... really mixed feelings for him, but it is very snazzy, (well folds down well and is comfy) he is now a danger at church without one, (other people's toddlers are very squishy if you fall them.... sad ) so will get it's first outing on Sun.

claw2 Fri 07-Mar-14 18:55:20

Thanks and sorry guys I cant stick around and offer any support after receiving so much today, ds is kicking off again and I need to go and sort him out.

Thanks again and hopefully I will be able to give a little something back later x

signandsingcarols Fri 07-Mar-14 18:59:15

Hi Star, I am SEN governer too, we are due for OFSTEAD soon so have to be prepared and on the ball, SENCO always looks at me like a mongoose looking at a very big snake anyway... so I'm her worst nightmare, as SEN PG, grin LoL!

homework Fri 07-Mar-14 19:20:29

Well done to little galena quiet an achievement.

Summer try find time this week to just relax and pamper to yourself a bit.

Moose don't know what to say that can help , so not going to say anything other than hugs and sorry there making everything so difficult.

Claw , your poor ds has had such a hard day , plenty of down time with his favourite pastime .

Well my son school trip was excellent he really enjoy it asked loads of question , learned loads of new stuff . Hoping they get invited back and be allowed to participate more . He said he love to do some one to one time working with the scientists. So been really big hit , he's going to ask if school can do some web stuff with CDC in America . Wishful thinking me thinks .

ouryve Fri 07-Mar-14 19:34:05

9 months is outrageous, star sad

moose - the relief is probably having your problems with the school out in the open. And lurchers are beautiful dogs. Is this the one with a beard similar to my DH's? wink

claw - of course you need to support your DS, right now. I don't think anyone would expect anything else, when he needs you so much x

sign - looking forward to seeing your new kitchen. I bet you all need a break from the disruption.

homework - sounds like your DS had a fab day!

marshmallowSqueeze Fri 07-Mar-14 19:38:27

flowers for those having a hard time

We've had a pretty stressful week but compared to others its not that bad, but I came home to a voicemail summoning to a meeting with ss and school Monday (work will love that ),

On a positive note we have found a local playgroup ds can attend on a sat to play with other children with asd which sounds good so hoping the visit goes OK tomorrow

SallyBear Fri 07-Mar-14 19:41:03

Moose your school/transport situation has been unbelievably shit since day one. You have my utmost admiration for how you are tackling it. wine wine wine For tonight.

Star - would that be classed as a conflict of interest then? Pecuniary Interest is I think the term? I'd have thought that you'd have been perfect for that role.

Sign glad the kitchen is complete. Are you still going to old cupboards to get out the mugs? Apparently it's about brain mapping. smile

Loved the words of the day.

ouryve Fri 07-Mar-14 19:46:40

I still open the wrong cupboard, looking for mugs, 4 years after I moved them, when we had the boiler fitted. Thing is, it's often not the right wrong cupboard blush I'm not good in the mornings!

moosemama Fri 07-Mar-14 19:59:09

Ourvye, they both have beards. The Deerhound cross has a grey one and pup is a redhead with a white goatee! grin

Homework, glad the trip went well and ds enjoyed it.

SallyBear, I don't think I'm tackling it well at all. It feels like we're floundering around in the dark and possibly making everything worse. It just does your head in so much when they play their mindgames with you. You know you're right, but then the doubts creep in and you start to question yourself. I keep saying I can't believe the lack of compassion for the child at the centre of it all, how can so many people care about the bottom line, more than the very real trauma of the children involved in these situations. It makes me seriously misanthropic.

"The more I know about people, the better I like my dog." Mark Twain

To be honest, I'm still over the moon about my mum being willing to come and watch Dancing on Ice with me - she's so not into skating but I think she's realised that as I am, and am progressing with it, it's going to be part of our lives grin She's also going to come and watch me compete for the very first time, if she's got competition day off grin

I'm loving my voluntary placement btw - I've made a little friend smile One of the little boys has taken a real shine to me, follows me and wats to play with me all the time. Makes me feel all warm inside, and makes me realise I've made the right choice of college course smile

Jacksterbear Fri 07-Mar-14 20:34:31

claw and moose thanks so sorry things are so very stressful.

ouryve I do the wrong cupboard thing, 6.5 yrs later blush.

Alarming meeting with senco & ct this week. They are insisting he is "fine" (by which they mean he is not causing the same level of disruption with his meltdowns as he was in Sept) and that he doesn't need the level of support he has been getting (they are sending his 1-1 supporter out of the classroom to do other jobs). And starting to make mention of "budget" and that they don't know what level of support they'll be able to provide fine Sept (eg his 1-1 OT sessions with the PE teacher may have to go sad). Shit <stressed, worried face>.

Sorry to ramble on about this stuff when others are having a much tougher time.

wine to all.

HugAndRoll Fri 07-Mar-14 20:40:52

Am I ok to join you? I have ds1 age 5 with hfa/aspergers, hypotonia and slight hypermobility and ds2 age 22 months who is very hypermobile.

I've posted on the boards quite a lot and have had lots of support but never felt confident to join the goose and carrot (I don't know why as you're all lovely).

bochead Fri 07-Mar-14 20:48:00

Star - nothing suprises me anymore!

The fact she said it out loud should be published in the local rag though!
Good reason for any parent of a SN child at the school to call for her immediate resignation imho. These people are allergic to accountability at every level. If she actually gave a damn, she'd be grateful to be able to tap into your knowledge base.

Disgusted!

I'm sorry lil un's got to wait so long to see a SALT.

PolterGoose Fri 07-Mar-14 20:53:09

wine and cake all round

<waves> at hug smile

I think I may have cracked a rib coughing, I'm hoping it's just a pulled muscle, it does hurt.

HugAndRoll Fri 07-Mar-14 21:00:42

Sounds very painful poulter.

I have a meeting with the senco on Monday to sign of a referral to the ASD specialist teachers to request they assess school/ds1. We're lucky he holds things together well in school (but falls apart at home). Although he has started biting himself and does that in school too.

NoHaudinMaWheest Fri 07-Mar-14 21:04:10

Hug welcome.

Polter ouch. Good reason to rest this weekend if you can.

Jackster sounds like another case if 'he's doing well so let's remove the support that enables him to do well.'

Star talk about letting your prejudices show!

Sign glad the kitchen is finished and good luck for Sunday.

Galena a belated well done to your dd.

SummerRain Fri 07-Mar-14 21:12:22

Hi hug... Welcome to the g&c smile

Polter <ouch> cracked ribs are nasty, as are pulled intercostal muscles tbh so either way take it easy... Do you have a decent cough suppressant in the house?

I'm doing better tonight, Ds1 is being bloody lovely and I'm getting lots of snuggles which is cheering me up. Ordered chipper food delivered as I couldn't face cooking and the boys are enjoying a late night. Without dd here to wake them in the morning they'll probably sleep late in the morning... Bliss!

homework Fri 07-Mar-14 21:14:53

Sorry Polter ribs are one of those things that do nothing for , painful , deep breathing / coughing horrid , found a little codeine and night time cough meds helps settle it down a tad.
Welcome to hug .
Jackster hopefully they realise that taken you child's help isn't making anyone's life easier , least of all there's. ( parent on there backs , in there eyes.)
Why do they not get that if they support our kids now , they be able to go on to have productive lives, that requires less money from the state in the long run. Why do they always just think short term.

moosemama Fri 07-Mar-14 21:17:14

Polter, I developed Costochondritis when I had a chest infection a couple of years back. It is really painful. Do you think it could be that? Co-codamol and anti-inflammatories are what you need.

Jackster, that makes me so angry. It's just typical, give a child support and they start to cope and do well - so of course that must mean they no longer need the support, so we'll remove it and watch them crash all over again. Why can't these people ever learn. angry

Hello and welcome HugandRoll. My ds1 is 11, has AS, hypotonia and slight hypermobility. Ds2 is 9 and has Joint Hypermobility Syndrome.

moosemama Fri 07-Mar-14 21:20:47

Sorry, meant to say Polter I seriously thought I'd cracked a rib and so did my GP, but it turned out to be Costochondritis.

... also posted too soon. "... Ds2 is 9 and has JHS and dd is 5, is looking likely to be more hypermobile than ds2 and experiencing more pain at a younger age."

PolterGoose Fri 07-Mar-14 21:22:56

Jackster angry

Thanks for the medical advice, I'm probably being melodramatic, it's a sharp stabby pain when I cough or move certain ways, but doesn't hurt when I'm sitting still breathing normally IYSWIM? I cracked/broke my ribs in a car crash a few years ago and it feels very similar but less bad. I can't take many drugs due to allergies, I'll see how it goes. Thank you flowers

SummerRain Fri 07-Mar-14 21:34:15

Sounds similar to my torn intercostal muscle Polter, take care as it's very easy to make it worse when the pain isn't constant.

HugAndRoll Fri 07-Mar-14 22:25:53

moose you are me in the future grin. If you don't mind me asking, when did your two hms children walk independently and channeling Mickey Flanagan did they walk or did they walk walk?

HugAndRoll Fri 07-Mar-14 22:27:03

There's been talk of eds with my ds2 but that was a while ago and it's not been brought up since.

claw2 Sat 08-Mar-14 11:44:20

Star "At meeting to vote in my role as SEN Governor, there raised a problem that the SENCO didn't want me as a parent of a child with SEN. Preferred someone 'impartial' apparently"

What a crock of shit, who could be better as SEN Governor, than a parent of a child with SEN. Oh yes a parent without any knowledge of SEN hmm You probably know more about SEN than the SENCO, that's the problem!

claw2 Sat 08-Mar-14 11:46:35

polter do you have this nasty bug that is going around? coughing, sneezing, blocked sinuses etc? We have a house full of it.

PolterGoose Sat 08-Mar-14 11:52:02

claw I don't know what it is, I've had it nearly 3 weeks now and am pissed off. No temperature, no achey limbs, occasional headache/nausea, but mostly just relentless snot and coughing.

How is everyone today? I had a lie in until nearly 9 which was lovely, ds has dissected some daffodils and looked at them under the microscope so he's happy, and it's a beautiful spring day here smile

Galena Sat 08-Mar-14 11:59:36

I got a lie in till 9 as well smile

However, DD has since had a strop about taking library books back and a strop about getting dressed. She is also on a go-slow.

I think she just needs a down day - she worked very hard for 2 weeks in Scotland and we didn't get back till Sunday afternoon then she's been at school all week. DH has just reminded me that she has gymnastics in 20 minutes! Eeeek!

HugAndRoll Sat 08-Mar-14 12:02:27

polter I hope you feel better soon. My dsis has similar and has been given antibiotics for a sinus infection, if you haven't already you may need to go to your GP.

I'm on a bit of a downer. It's a lovely day and I'm planning on taking the boys out after lunch for a train ride (ds1 loves train stations) but I already know ds1 won't want to go. On the weekend he never wants to do anything other than stay in his room on his own either playing on his computer or re-enacting a computer game with his cuddly toys. It's a massive effort to get out of the house and there will be meltdowns to contend with. I just wish that he wanted to spend time with me sad.

claw2 Sat 08-Mar-14 12:04:30

Oh no 3 weeks! It does sound similar Polter, I have been like it for about a week now, feels like a head cold, with the added bonus of cough and face ache, due to blocked sinuses and sore throat due to coughing. My son and his girlfriend has also started sneezing, which is how I started off a week ago. Hope you feel better soon.

Ds is still sleeping and I have left him there, he is just so drained. Its a lovely day here, I plan to wake him in a moment and have a walk to the shop.

claw2 Sat 08-Mar-14 12:08:28

Galena, 20 minutes to get to gymnastics eek indeed!

Hug, ds is the same, he never wants to leave the house. Its hard isn't it. We will probably manage a walk to the corner shop...in his pj's today!

Galena Sat 08-Mar-14 12:10:25

He's taken her, and I've been tasked with buying lunch and the ingredients for carrot and courgette cakes... Ho hum.

PolterGoose Sat 08-Mar-14 12:10:37

Hug we've learned that ds needs weekends to be as chilled as possible, 5 days of school takes it toll so we don't do much at all, ds needs to re-charge, don't feel you need to do things.

claw glad ds has slept, hope he's ok today.

HugAndRoll Sat 08-Mar-14 12:11:40

Good luck in getting to gymnastics galena.

claw I'm glad my ds isn't the only one but not glad you have the same difficulty.

HugAndRoll Sat 08-Mar-14 12:12:57

Cakes sound amazing!

Polter - I feel bad as I should take them out when it's nice. I suppose we have a different should though.

PolterGoose Sat 08-Mar-14 12:21:37

I understand that Hug and it's tricky, and it's undoubtedly harder when you have more than one child, it's easy for us to bend to ds's demands and refusals because he's an only child, but it also means we probably don't push him as much as we should because it's easier.

moosemama Sat 08-Mar-14 12:26:19

Hug, both of them walked around 12 months, but preferred not to.

Ds2 in particular was a bum-shuffler - never crawled and only walked when he had to - before we knew why, we used to call him our 'little pudding' because he used to just sit like a little pud and hardly move around at all, unless he really had to.

He was dxd when he started suffering really badly from what the GP said were growing pains. hmm Once we started going through his history, we realised he'd always struggled and wasn't just accident prone, he wasn't tripping and falling, his joints were collapsing underneath him. He had the nickname Mr Bump when he was little as he was forever falling over and his teachers always said he seemed to fall over nothing at all. sad I used to get up to 5 calls for head injuries in one day while he was in Reception, as his ankle would go and he wouldn't save himself with his hands. At the time everyone thought he was just clumsy. He now says he just didn't have the language skills to explain what it felt like when his joints sub-luxed, so he'd just say he fell. sad

Dd was walking at 10 months, pushing her little truck around, but she was very small and light for her age. It's since she had a sudden growth spurt that she's really started having problems and although she may not be a 'loose' as ds, she is suffering from a lot of pain, younger than he did.

I also have JHS, but didn't realise until ds2 was diagnosed and haven't gone for a formal dx. I had a lot of pain and problems as a child, had some investigations and was supposed to have some ops on my legs, but it was never followed through for various reasons. I had a couple of ankle injuries about the time ds2 was diagnosed and the physio said she'd never seen such hypermobile feet in all her years of practice. blush Since then we've traced it back right through my Mum's paternal line. My Mum has had to have a hip and knee replaced already, is due to have the other done in a few weeks and then they will start planning her last op on her other hip. Her consultant says the damage could well be as a result of hypermobility.

I haven't pushed for any more investigations re EDS etc, as it was hard enough to get our NHS PCT to do anything in the first place. First Paed would only put 'lax ligaments' down and not a proper dx, despite telling me that ds's joints were extremely hypermobile and those in his left hip, knee and ankle were particularly bad. We had to push to get it properly recognised. Then he did get an OT assessment, the lead OT went into school in an advisory capacity and he was also referred for a completely useless course of physio, where the physio told us at the first appointment she had no idea about JHS in paeds and had to keep leaving us to go and ring someone who might know what to do. She gave us a list of exercises for him that I had to go home, research and take back to her to explain that she would actually be making him worse not better if she insisted he followed the programme. hmm angry

The OT was great, appalled at how badly ds was treated by the Paed and Physio and tried to pull some strings to get him referred to the Childrens' Hospital, who apparently have a specialist team, but they refused to take the referral or help at all, because he was dxd at a different hospital and not by one of their Paeds. So, he wasn't allowed to access their pain clinic, even though he suffers daily hip, knee and ankle pain and has regular neck pain as well. angry

We're currently considering asking for dd to be referred to them for assessment though, as if we get the right advice for her, it will also benefit ds.

I have considered a private appointment with Prof Grahame, but decided at the time it was just too expensive, too far away and not something we could handle on top of all the stress around ds1's ASD dx and fight for a statement etc. I haven't ruled it out completely though, because I have lots of odd health issues, including vascular lesions on my brain, which I feel need to be properly investigated and EDS eliminated.

claw2 Sat 08-Mar-14 12:29:31

Carrot and courgette cakes sound interesting!

Ds did cheer up last night eventually Polter, he will be fine, until Monday morning, he is insisting that he is not going back to school. Im dreading Monday, he is 10 now and not so little, trying to dress someone who doesn't want to get dress, is a chore.

Hug, I can just imagine the teachers face when ds is asked to write about what he did during the school holidays...didn't get dressed and played x-box! But this is what he enjoys doing, going out is a major upset for him.

moosemama Sat 08-Mar-14 12:31:09

Ds1 has already had his weekly meltdown because we asked him to get dressed and dd dared to have the audacity to ask if we were going out anywhere this weekend. Just the vague possibility we might leave the house, sometime this weekend, was enough to tip him over the edge.

He is actually dressed now although looks like a cross between a scarecrow and a tramp, but we need to walk the dogs and I know he'll really benefit from outdoor space and fresh air and come back in a better frame of mind, but am not sure I'm up to the battle to get him out of the house in the first place. hmm

I can see dh ending up walking the dogs with ds2 and dd and me staying at home with ds1.

HugAndRoll Sat 08-Mar-14 13:02:48

Thank you so much for that post. Ds2 is 2 at the end of next month and can walk a while holding onto two hands but is nowhere near walking independently. He falls a lot holding on and where his joints are so floppy his hands regularly slip out of mine so he's always bruised.

I've been told he's doing really well to be doing what he is as he's that hypermobile but I'm wondering if I should push for more intervention at his next paediatrician appointment which is this month.

Ds2 is still asleep at the moment but I will try and get them both out at some point as long as it's not too traumatic to ds1.

ouryve Sat 08-Mar-14 13:08:29

Jackster - if your DS is anything like DS1, his "improvement" will all fall apart once he moves up in September. They're being very short sighted.

HugnRoll you're always welcome cake My boys are 7, ASD, non-verbal and hypermobile (didn't walk until 21 months) and 10, ASD, ADHD and with hypermobile hands and feet and significant sensory processing difficulties. DS1 was walking earlier than DS2, but DS2 now has much better posture and is a lot less clumsy than DS1 (DS2 can tiptoe through a room full of toys, DS1 treads on them all and bumps into all the walls for good measure), though he tires very easily and still needs his buggy for the school walk. He even had DH carrying him round the shops, earlier. I have HMS. Have had problems all my life, but only diagnosed a few years ago, when I lost some function and movement in my previously extremely bendy hands.

Polter. Ouch. Just ouch! [co-codamol]

Well, we did our weekly big shop, today. M&S was packed full of rude, barging people. Wish I'd had one of the boys, since they often clear a nice space around me, specially when DS2's practising his "p" sounds! Probably for the best, though, as he was insisting DH carry him everywhere and screaming when he had the nerve to put him down. We see his paed, next month and I think we need to talk about a referral to wheelchair services. We could easily buy a small ordinary wheelchair for in the car, but I'm wrecking my hips knees and hands pushing his major to school and back (though not quite as much as when I was scraping him off the floor all the way there and back) - and he's getting a bit tall for it - his head almost touches the hood.

DH has finished his antibiotics for his abscess and, while he's not in as much pain, his jaw is still very stiff and painful. Another week of soft food and soups (and much to DS1's disgust, rice pudding - he's genuinely phobic of it!) I still have the tail end of the salmon I bought for Christmas in the freezer, so I thin that will be Sunday dinner. I have a lamb curry, for tonight, as the lamb in it is usually very tender. Will be served with baked potato and slightly overdone cauliflower!

claw2 Sat 08-Mar-14 13:14:52

Moose, if ds is left to dress himself, he will wear the most inappropriate, odd looking combinations! During the holidays, a cold rainy day, he came down wearing a white school shirt, with some old battered track suit bottoms half way up his legs (no pants) flip flops and a pink hairband! hmm then the melt down that follows, when pointed out that something else might be more appropriate!

He is awake now, came into the kitchen, refusing to talk to me and giving me evil looks. This is because he told me he didn't want to go to school and I sent him and he had a terrible day. Apparently if I had listened to him, this wouldn't have happened! He has taken his breakfast to his room and is refusing to talk to me.

If I suggest getting dressed and going to the shop, I will be the devil himself and obviously hate ds!

bochead Sat 08-Mar-14 14:51:36

Ds was really grumpy all day just yesterday because the weather changed. Too sudden for him but fantastic tho' I am I can't change the weather to suit his highness so you have my sympathy Claw2. Today he is finally tentatively starting to accept the sunshine & has agreed I can wash his winter coat. The dog basking and running around happy this morning again helped shift his mood.

It's so odd, as now he's not stressed by school I can almost forget he isn't NT and something like this comes up that reminds me again just how different he really is.

moosemama Sat 08-Mar-14 14:53:18

Battered tracky bottoms half way up his legs is the look ds1 is going for today, along with his pj top (he thought I wouldn't notice) under an ancient and very scruffy GAP hoody that he is surgically attached to - and one sock. hmm

He is not talking to me either, after being told off for ranting at dh and I when we were discussing something important and were neglectful enough to not have made his lunch at the time he says he should have it.

We've worked hard on teaching him to accept a degree of flexibility in our weekend routines, in terms of lunch not having to be at 12.00 on the dot etc, but when his anxiety is as high as it is at the moment he reverts to maximum rigidity. I am one of those people that hates being told what to do and him telling me I have to make his lunch now makes me bristle and want to make him wait an hour, even though I know he can't help it. (I fell out with dh this morning because he said I should have my bath before the water went cold - I then deliberately let it go cold because I wouldn't be told when to have my bath. blush)

He was ranting over and over about his lunch so loudly that dh and I couldn't hear each other speaking and I snapped and shouted at him to shut-up. blush sad Not my finest hour. I am just so full-up at the moment that I don't have enough reserves to stop myself snapping. Not a great combination with a highly anxious 11 year old.

I have only been able to leave the house, other than 15 minute school runs where I barely speak to anyone (and I didn't do those for several weeks) and short trips to the frankly dull local park with the dogs, since the start of January and I honestly think it's pushing me to the edge. The only chance I get to go out is weekends when dh can drive and help me if I need it and the dogs can come too, but that's when ds1 refuses to leave the house and arguing with him uses up all the energy I had available to go out in the first place.

I have raging PMT at the moment as well though, so it's a pretty volatile cocktail in our house this weekend. blush

PolterGoose Sat 08-Mar-14 15:06:11

moose we had the demanding lunch be ready at 12 thing for ages, eventually we now have agreed that lunch can be anytime between 11.30 and 12.30 and tea between 4.30 and 5.30,so we have a little flexibility, and it is definitely worse when he's anxious, it's hard though. Sending lots of cake for you.

boc how dare you not be in control of the weather shock grin

claw2 Sat 08-Mar-14 15:15:27

Boc, yep we don't do weather changes in this house! ds will continue to wear long sleeves and track bottoms even on the hottest days. I might manage to get his coat out of his death grip after a few months, just as the weather changes again! and flip flops all year round, even when its snowing!

Glad to hear your ds is doing so well now Boc grin

Moose, I can get ds out of the house, after lots of stropping about getting dressed and actually doing it. Then the minute we leave I have 'can we go home now' repeatedly, constantly, until we get home. Then hanging on me 'my legs are aching, can we go home now' Seen as we are leaving the house supposedly to do something that he will enjoy and he obviously isn't enjoying it, I just think whats the point!

Do you get any time to yourself when the kids are at school?

ouryve Sat 08-Mar-14 15:19:24

No worse than me telling DS1 to shut up when he was yelling at me and DS2, who was refusing to have any socks on, the other morning, moose He usually tells me not to be so rude, when I snap, and I have to remind him that yelling at me when I'm busy with someone else is actually rude, too. It's not easy, whatever the underlying reason for the yelling.

bochead - no sunshine to complain about, today, but still plenty of icy wind. It was DH who was getting the ear ache about it, this morning, though, as he took the boys to do their thing while I battled the rude older generation of today in M&S grin

SummerRain Sat 08-Mar-14 15:24:04

My boys aren't even dressed blush

I'm in a bad way painwise today (my punishment for hoping I night have got off lightly when the pain wasn't so bad the last two days) and dp is flustering about trying to make me comfortable (he panics a bit when he sees me visibly in pain) so the boys are being neglected somewhat today. Thankfully there's rugby on so they're happily parked on the couch watching that (I say watching but they're simultaneously playing 3ds games, wrestling each other and chatting, one activity at a time is not their style)

Claw, sorry you're in the doghouse today... I hope he comes round soon so you can enjoy what's left of the weekend.

Apologies, I was going to respond to more of you but this has taken me a ridiculously long time to type and I've forgotten most of what I meant to say blush

HugAndRoll Sat 08-Mar-14 15:26:27

We didn't get out, ds1 point blank refused. My dmil is having both boys tonight; I'm looking forward to a full night of sleep and a lie in.

bochead Sat 08-Mar-14 15:27:12

It's so nice to talk to people that "get" what an achievement washing a manky coat is.

Luv y'all grin.

ouryve Sat 08-Mar-14 15:29:08

Summer, I had a MC in between the two boys and I was pretty useless for the best part of a week. Even when I was feeling a bit better physically, I was still shattered due to the hormonal come down and the awful effect it had on my sleep.

Look after yourself x

Galena Sat 08-Mar-14 15:29:34

muffins in oven. will see how they taste.

ouryve Sat 08-Mar-14 15:33:44

All 3 boys occupied. Going to go hide in the bath for a bit, I think.

DS2's making qu words, asking me to name all his engines and tell me the shapes and colours of his buttons and shoelaces. Lovely but it's only ever me he asks! (he does have a few favoured kids at school that he asks, too!)

claw2 Sat 08-Mar-14 15:34:26

Its refreshing isn't Boc! rather than being told you just need to more 'strict'! or that you are neglecting your child's development for not having lots of clubs and activities lined up! [rolls eyes]

Summer ds isn't dressed and wont be getting dressed either and I am not even going through what you are. Sorry to hear you are in pain and you really do have my sympathy and best wishes x

PolterGoose Sat 08-Mar-14 15:39:12

Summer more (((hugs)))

claw2 Sat 08-Mar-14 15:44:20

Im off to do some housework.

Summer I had a missed MC at what should have been my 12th week, as well as 3 others. I really hope you are holding up and my thoughts are with you.

Galena Sat 08-Mar-14 15:55:48

Summer hugs. sad

SummerRain Sat 08-Mar-14 16:17:22

Thanks all x

Ouryve, both my boys focus all their frantic questioning at me too, with Ds1 is a thousand facts and statistics a day and ds2 will get obsessed with a particular letter, or sums, or writing a list of words and need my constant input. It's exhausting!

youarewinning Sat 08-Mar-14 16:44:32

Can I say I'm so pleased to read about others of you shouting at your DCs and staying in all day to avoid stress. I was beginning to think I was the only one as you all seem so calm grin

We did go out today to local theme park as we have season tickets. DS spent most of it in the park and we played mini golf! He's been really reluctant to go out for weeks so this was a refreshing change.

He's on his IPad with headphones on now! (Another new set as he chewed through the others - AGAIN!)

Summer - I'd just relax and allow DP to fuss. I hope you feel better soon.

claw - hope your DS feels better soon.

HugAndRoll Sat 08-Mar-14 17:21:59

Yay we got out! Ds was anxious (lots of chewing his chewy gem, withdrawing to quiet corners of the park) but wasn't too bad and we got a dose of vitamin d.

Summer - I really hope the pain subsides soon x

Galena Sat 08-Mar-14 17:37:19

Glad some of you could stay in and chill and others could get out and about. DD has played in the garden after making cakes and is going to have a late dinner. The cakes are rather tasty, I must say!

AliceinWinterWonderland Sat 08-Mar-14 17:50:58

Eeeeeek! I missed that there was a new thread. I will catch up reading it as soon as DS2 is in bed, when it's a bit quieter.

Have had a lovely (if a bit chaotic) day with the DCs. It was our "Wii party" day, so they got to play a bunch of different Wii games, dancing, spongebob, driving, making ice cream cones, and so on. An attempt at toad in the hole which resulted in a bit of a flattish Yorkshire pudding part, but the boys ate it and loved it. I'll have to try it again sometime and see if I can get it right. Wore the boys out running around outside and jumping on the trampoline as well, so hopefully a peaceful evening ahead.

Glass of wine and a new book to read will complete my evening. grin

Galena Sat 08-Mar-14 18:06:25

Here's little miss chef!

She's stuck 9 photos onto paper with captions such as 'I am putting butter in the bowl.' and 'I am cracking the large egg into a cat cup.' I'm sure the teacher will think I stood over her and forced her to do it, but I really didn't!

homework Sat 08-Mar-14 18:09:29

Summer , sorry you feeling so rough . Least you dp is being helpful and boys are being as good as kids can be.
I'm another one with a teenager who is difficult to get out and about over the weekends . Sometimes it's just not worth the battle.
We got school report in mail today not too bad , few area of constructive criticism , which didn't go down too well , had to explain it was just areas he could improve on and nobody was saying anything bad. He's doing his best so I can't ask for anymore , well maybe a little bit more revision occasional over the weekend , less time on the computer, or he could even do the revision on the computer.
That sounds like I'm never happy , I am just know he's got the potential , so want him to achieve as much as possible.

homework Sat 08-Mar-14 18:24:52

Galena great photos .

bochead Sat 08-Mar-14 18:37:34

Summer - sending you a hug.

SummerRain Sat 08-Mar-14 18:47:17

Galena, she's such a cutie grin

I'm doing alright, a bit shellshocked at how gruesome this is getting. Thankfully lovely dp is tackling everything today and the kids are being as good as can be expected.

hazeyjane Sat 08-Mar-14 18:49:08

Went to a lovely farm centre today. Ds was in heaven - mini tractors and diggers. I was in heaven as cafe did the best coffee and cocolate cake in front of a roaring fire.

hazeyjane Sat 08-Mar-14 18:50:56

cocolate cake??

HugAndRoll Sat 08-Mar-14 18:53:52

Lovely photos both.

PolterGoose Sat 08-Mar-14 18:59:22

grin at cocolate cake

Lovely photos hazey and Galena

SummerRain Sat 08-Mar-14 19:00:59

I like the sound of cocolate cake wink

homework Sat 08-Mar-14 19:01:28

Hazey, lovely the way there working and playing together .

ouryve Sat 08-Mar-14 19:17:56

DS1 used to love baking with me, galena. He doesn't have the patience, any more.

grin at cocolate cake! DS1 has reached a certain age where he would say "that sounds a bit rude". I wouldn't mind, but I can't even work out why some words sound a bit rude to him!

DS2's hair has finally been cut with minimal trauma, anyhow. Took precisely 1.5 epidosdes of Alphablocks, including a bounce break, while DH rescued all the shampoo bottled he'd remembered had been left in DS1's reach, in the bathroom. Apart from a few tufts around the bottom (difficult to cut perfectly straight, as he fidgets so much) I've not done a bad job of it. Should be a lot easier to brush, in the mornings. He actually enjoys having his hair brushed (I wouldn't have it long, otherwise) but it was like straw and knotting very easily, as it hadn't been cut properly for over 4 months.

AliceinWinterWonderland Sat 08-Mar-14 19:33:49

hazey yes, nice that they are together on the little tractor. I suspect mine would be pushing each other off in an attempt to drive by themselves. hmm

ouryve congrats on the haircut. They're always a bit of a nightmare here.

PolterGoose Sat 08-Mar-14 19:40:40

Well done with the haircut ouryve my ds has asked for his to be cut tomorrow because it's 'annoying' shock

hazeyjane Sat 08-Mar-14 19:41:20

they are both really lovely with him, and love helping him do stuff - i hope they never feel they have to help him, but at the moment it is ok.

dd2 told me this morning that a boy in her class has been given a toy to play with because he is a 'fidget pants', i said ' oh that's nice, what sort of toy' and she said, 'little balls, so whenever xxx is feeling fidgety he just plays with his balls...they are soft and squooshy so he can stretch them into different shapes and....mama and tata why are you both laughing so much??'

ouryve Sat 08-Mar-14 19:50:03

Hazey grin (That's exactly how DS2 plays with his balls blush)

DS1 grumbled that it wasn't him having his hair cut. I pointed out that his hair isn't in his eyes, so can wait!

PolterGoose Sat 08-Mar-14 19:51:37

grin at fiddly balls

hazeyjane Sat 08-Mar-14 20:09:01

ugh, ds is in wild eyed and frisky mode, it could be a long night.

ouryve Sat 08-Mar-14 20:20:57

wine Hazey.

And I have plenty since my first m&s wine club case arrived today. Do you want red, red, red, red or, if you like, I have a nice bottle or so of red?

Boys in bed. Listening to rox music, adding a few rounds to my sock (thumb threatening to lock up if I do too much) and waiting for my date with a slightly greasy and pot bellied but strangely attractive Belgian detective.

hazeyjane Sat 08-Mar-14 20:38:41

Ooh definitely a glass of red, and some cheese.

I like the sound of a wine club.

Dh has taken over with ds so I can have a bath, then I think I have a date with an early night and a wriggly ds in bed.

SummerRain Sat 08-Mar-14 20:57:05

My lot are still up, dp is doing well but he's been fussing over me so much dinner was very late and he appears to have forgotten to send them to bed grin

hazeyjane Sat 08-Mar-14 21:07:40

glad you are being fussed over, summer.

ds is now downstairs watching morcambe and wise after wailing because i was in the bath, and waking up the dds.

any more wine ouryve?

SummerRain Sat 08-Mar-14 21:45:48

Oh no Hazey. Is he likely to doze off in front of the TV?

Dd fell asleep on the couch (obviously no sleeping went on at bfs house last night) and when dp woke her up she was still half asleep stumbled over to the turf basket and started rummaging through the kindling for her pyjamas. She was most confused when I asked her what on earth she was doing. Dp had to physically remove her and carry her upstairs to her pyjamas. She appeared a minute ago to say good night to me and almost crashed into the ironing board grin this is the child who's spent the last 9 years tormenting us by being awake every hour of the day and night, it's quite funny to see her sleepy and subdued for once!

ouryve Sat 08-Mar-14 22:42:52

I only have a dozen left, Hazey, so you'd best hurry (bought one, this morning, because I thought I might miss the post, but they were delivered to next door!

Summer - now you know how to get DD to sleep - just every other night!

SummerRain Sun 09-Mar-14 00:00:59

grin I'm still laughing at how dozey she was, first time in 9 years I've ever seen her sleepy shock

Hope you're enjoying your bottle of red smile

hazeyjane Sun 09-Mar-14 07:15:09

Well ds went to sleep at 11.30 after giggling manically for a good 30 minutes:\

I wonder why we have these random nights where melatonin just doesn't make any difference, odd.

Also ended up with dd1 sobbing in bed with me (worried about 'robbers' after a theft of lead off the school roof!). Dh was relegated to ds's bed so I could sleep with ds and dd1!

youarewinning Sun 09-Mar-14 07:23:37

hazey I hope you don't mind me posting this but I know there's a question over mini Hazey having epilepsy. Have you ever heard of gelastic seizures? They present with manic laughing. Glad he settled eventually and hopefully you had a good nights sleep.

SallyBear Sun 09-Mar-14 07:35:43

Hazey, ds4 has a manic fit of giggles for about 30 minutes before he passes out. This could be during the evening or at 3am. But it's generally part of his method for getting off to sleep. God only knows what he finds funny. I read The Reason Why I Jump, and the author said it was either because it had taken him all day to get the joke, or he was reliving the moment in his head.

hazeyjane Sun 09-Mar-14 08:21:21

Hmm, have just watched some gelastic seizures on youtube, some of them do look a bit like ds, manic giggles - he has also done little laughs in his sleep. I will try to film to show his paed ( who still hasn't got back to me or gp).

I know when he is going to be like it, because he has a wild eyed look, dh says he looks 'fizzy'.

Sally, that is interesting about ds4 - ds looks like he is in a world of his own, last night he stood in the middle of the room, stuck his arms out and just twirled for about 5 minutes with his eyes closed - utterly blissed out.

youarewinning Sun 09-Mar-14 10:03:42

It was the previous wild eyed look that made me think gelastic seizure.

ouryve Sun 09-Mar-14 12:18:24

Ds2 often giggles himself to sleep but in his case he has a very giggly personality. He even has a particular giggle for when something is all wrong

claw2 Sun 09-Mar-14 12:22:35

Great photos smile

PolterGoose Sun 09-Mar-14 12:39:04

I've just tortured ds given him a haircut. It was too long and his hair is too thick to use the clippers straight away so had to scissor cut first, which resulted in an awful tirade of screaming, tears and abuse. The clipper bit was easy in comparison. I am glad it's over.

claw2 Sun 09-Mar-14 12:42:33

Ds has his school photo tomorrow, there is no way I would have got him to the barbers this weekend, so looks like another floppy Hugh Grant photo!

ouryve Sun 09-Mar-14 14:06:31

DS1's taken against the clippers - too tickly. Cutting his hair takes an age, now.

SummerRain Sun 09-Mar-14 17:11:23

Ds2 won't tolerate the clippers either, and I'm awful with a scissors. Once every two years he lets me being him to the barber, sometimes he even lets the barber cut his hair hmm

Feeling rough today, I blacked out from the pain earlier as I'd stupidly let the neurofen plus wear off blush Luckily dp was hovering anyway and caught me on the way down.

HugAndRoll Sun 09-Mar-14 17:14:25

Both of mine need a haircut. I'm going to have to get them done next weekend as it's my fil 60th birthday party the following weekend and they look like real scruff bags.

I was going to post another thread but if you don't mind me asking here, I just need a bit of advice. If it's better to start a new thread I will (don't want to hijack, especially during my first week posting on the g&c threads grin.

HugAndRoll Sun 09-Mar-14 17:15:28

Oh no summer! I think you need to speak to someone, your pain shouldn't be that extreme surely sad.

Jacksterbear Sun 09-Mar-14 17:23:26

Summer that doesn't sound good at all. sad Hope you can take it very easy for a bit. thanks

Sorry I disappeared off the thread on Fri but thanks to those who replied to my rant about ds' levels of support at school.

SummerRain Sun 09-Mar-14 17:26:46

I tend to suffer from really horrific cramps during my periods and the afterpains after ds2 had me in a similar state so I don't think anything is going wrong as such. The hospital is an hour away and we'd have to drag the kids so I'm trying to avoid that tbh. Docs are open tomorrow so I might pop in if it's still bad and ask advise.

SummerRain Sun 09-Mar-14 17:29:17

Hug, I'm the wrong person to advise about haircuts... Ds2 won't even let me brush his and permanently looks like a shaggy headed tramp as I have yet to figure out how to tackle that particular issue grin

ouryve Sun 09-Mar-14 17:41:07

Summer - our OT suggested using one of those knobbly massage brushes to de-sensitise the scalp and at least condition the scalp, even if the hair stays messy. DS1 now just about tolerates us using a tangle teaser brush on him. He complains that other brushes hurt, but not that one.

PolterGoose Sun 09-Mar-14 17:48:25

Hug you can ask anything on here smile

Summer I think seeing the GP tomorrow is a good plan if this pain continues flowers

HugAndRoll Sun 09-Mar-14 17:53:59

Summer, I really hope the pain goes soon. Only you know what's "normal" to you but if it's the same tomorrow please ring your GP.

I wanted to ask if I should be more concerned that no tests have been c

HugAndRoll Sun 09-Mar-14 17:55:49

Oops.

Conducted to determine why my ds1 has low muscle tone. Ds2 had bloods to see if he had a muscular dystrophy (thankfully not) but ds1 hasn't had anything. From what I've read he should have. He's nearly 6, would you enquire if it was you?

SummerRain Sun 09-Mar-14 17:59:58

Ds1 has never had much in the way of tests either. He had bloods taken to rule out chromosomal abnormalities but other than that nothing. He's received ot and physio both of whom told us it was hypermobility but he has no formal dx of such either.

HugAndRoll Sun 09-Mar-14 18:11:05

Thanks summer. Ds1's low tone has been sort of swept under the carpet due to his asd diagnostic process. Maybe I should leave it.

SummerRain Sun 09-Mar-14 18:15:36

Same here, Ds1 doesn't even get ot anymore as camhs can't seem to keep an ot on staff. Luckily we had a brilliant ot before who helped us loads and the school have put him in a group receiving ot from the sna once a week.

Has your ds been given orthotic insoles? They've helped Ds1 massively, both with clumsiness and pain.

Galena Sun 09-Mar-14 18:16:31

I wonder whether it's something to do with clinical presentation, hug . By that I mean some areas won't diagnose cerebral palsy without an mri, but with dd they did because the way she presented was 'classic cp'. I believe that by 6 a sufferer of muscular dystrophy would be losing function, so since that isn't happening they have decided it's not that... Of course if you want the tests, push for them.

Summer I hope things start to settle a bit soon.

Super-DD has done it again! We went to Cotswold Wildlife Park today (well worth visiting if you're ever nearby) and decided we'd try without the wheelchair. She walked all the way around, then we'd promised her a ride on the train, so we were on that and it broke down at the furthest bit of the park, so we had to walk half of it again! 2 miles we walked... and she walked every step of the way! Love her to bits!

PolterGoose Sun 09-Mar-14 18:21:04

Hug ds was 'diagnosed' with hypermobility and low tone at the same time by the physio he saw once, we were given advice on the hypermobility (not a lot though) and referred to orthotics (he has custom insoles which have made a big difference) but the low tone was never discussed and I didn't even realise he had it until I went back through his paperwork last spring to do DLA renewal blush I still don't really understand it confused

Galena well done dd grin

youarewinning Sun 09-Mar-14 18:23:31

Wow minigalena that is amazing. That's a long way for any 5yo let alone one with cp and who has recently had surgery. She's one determined miss' grin

youarewinning Sun 09-Mar-14 18:28:12

I often wonder what classes as low tone and what's motor difficulties? I'm desperate for DS to see an OT. Private sensory OT at my school has helped me and we've established DS has retained some primitive reflexes and has poor fine motor skills. I'm wondering if low tone or hyper mobility may be an issue as I have hyper mobile wrists and ankles.
For example gripping a float in swimming is such effort kicking his legs becomes difficult - in fact he couldn't even lay flat with afloat at first and always twisted! Yet he also seems quite tight in some movements of his hips confused

HugAndRoll Sun 09-Mar-14 18:33:34

galena that makes sense and is possibly why no one seems concerned. He goes to OT which is helping. Well done to your dd, she's a superstar.

youare if your ds doesn't have a Physio it's worth asking for an assessment.

polter I don't really understand low tone either.

youarewinning Sun 09-Mar-14 18:43:58

hug I'm working my way through requests for assessment ATM! Still fighting for an ed psych assessment. This is for the child who has had every intervention going and has still only made 2 sub levels progress in literacy in 2.5 years of schooling. A 2B in year 5 shock even his pead cons has suggested one but keep being told school don't have enough hours to get him seen - he's not a bad enough case angry that is because his maths is a 4B and the other subjects he's keeping up in because of intelligence not because of writing ability. (Sorry that became a bit of a rant!)
Have parents eve in 2 weeks and I'm going to ask for confirmation of when he'll see an ed psych - if it's not given I'm going to start complaining to HT and then take it further and contact ed psych team in LEA direct as well.

HugAndRoll Sun 09-Mar-14 19:33:24

Our ed psych was a student. She was very nice but inexperienced and it took 2 months to receive the report. I will keep my fingers crossed for you!

youarewinning Sun 09-Mar-14 20:19:51

Talking of students - DS has just had a student teacher in who had to do her dissertation on meeting the needs of students with sen - she chose DS as her case study hmm

grin

ConstantCraving Sun 09-Mar-14 20:22:53

Hi all, just dropping by to ask about stimming. DD does hand licking - she licks her palm and then rubs her face and her face is getting really sore and red in places. She also spins and circles the room but that doesn't worry me as there are no negatives (unless she gets too dizzy). Are there any links to help me understand it? She's also been talking a completely made up language today so guess she's pretty stressed - but I can't work out why sad.

SummerRain Sun 09-Mar-14 20:27:34

Youare, Ds1 had a student teacher who wanted to use him for a similar study... Never heard anything more about it after he asked me permission though so I have no idea whether it went ahead. It's a bit odd being asked isn't it? I had sort of deluded myself that Ds1 wasn't quite so obviously different.

PolterGoose Sun 09-Mar-14 20:49:55

Constant I found this this blog post on tics and stims helpful. The spinning sounds like sensory seeking, and the language confused my ds has always 'played' with language, the most noticeable was when he dropped all consonants, his was definitely playful and exploratory rather than anxiety based IMHO.

ConstantCraving Sun 09-Mar-14 21:08:51

Thanks Polter - that's a really interesting read. You're right, I think. about the new 'language' being playful. She loves language and gets obsessive about reading and writing stories with her magnetic letters. She's excellent at it - maybe she wants the challenge of inventing her own?
Licking bothers me as her face gets sore - and (and I KNOW that's wrong and I need to get over this), it makes her stand out, and that bothers me still - though she doesn't seem to notice.

Jacksterbear Sun 09-Mar-14 21:46:41

Constant, my DS licks around/under his mouth and usually has red raw patches of skin under his mouth, in winter. Just as a practical tip, I find rubbing Vaseline on it (I do it when he's asleep as he won't have anything on it knowingly) works absolute wonders to heal it.

He also does all sorts of stuff with language some of which I think have a sensory element (eg strings of nonsense rhymes), some of which have a control element (eg saying just the opening sounds to words and wanting me to guess what he's saying/ wanting me to guess "passwords" before he'll agree to things etc) and some of which seem to be just playful experimenting with language, as polter says.

youarewinning Sun 09-Mar-14 22:06:18

My DS seems to hang his tongue out a lot! Not sure why as he does it when running, thinking - standing still! He also gets sores around his mouth in winter. I use the aloe Vera lip balm in athe little tin. It seems to help.

PolterGoose Mon 10-Mar-14 06:32:26

I'd suggest something like Lansinoh or Kamillosan for her hands and face because they're safe for breastfeeding so will be safe now.

ouryve Mon 10-Mar-14 07:53:02

Wonderful start to the week. Ds1 well and truly off on one. At least he's vanished upstairs and isn't taking it out on his brother any more

SallyBear Mon 10-Mar-14 08:00:33

Mondays..... Ugh.
DH is away for two days, so I'm marshalling the troops and hoping that they're organised, as I'm not this morning!

claw2 Mon 10-Mar-14 08:14:47

Better start to Monday morning, which was a nice surprise!

Yesterday afternoon I managed to get ds dressed and to the park. I sat on a bench and watched ds trying to join in with a group of kids and it seemed to be going well, until they moved closer to where I was sitting. They were telling ds to sing, then laughing at him sad apparently when we got home ds told me one of the girls had recorded him on her phone. No wonder ds wants to stay home sad

moosemama Mon 10-Mar-14 09:19:49

Lansinoh works well, but don't use Kamillosan. I used it on ds2, as he always had sores under his mouth and the school called me in to tell me to take him home, because he had impetigo, as it had turned the scab yellow. hmm

ouryve and Sally, brew hope your days improve.

Claw sad

Bad start to the week for me. Had more nocturnal episodes last night than I ever have before, which isn't surprising as dh and I all but split up over the weekend and he decided the best way to handle it after we had 'the talk' is to pretend it isn't happening and jut carry on as normal (which basically means following his own agenda and ignoring me). He then waited until I'd dragged myself out of bed and was wobbling around downstairs trying to come to this morning, before finally deciding that perhaps he should take ds2 and dd to school.

Ds1 is still off. We're waiting to hear when we are going to be 'allowed' to meet with the HT and have sent a list of things the school has to do to prior to AR to safeguard and support ds in order for him to go back. His anxiety symptoms have improved over the weekend, but for some reason the school seem to think we would just be sending him back in without any reassurance or commitment from them. angry They said they'd start procedures for an emergency AR, so I guess that will be a couple of weeks or so.

ouryve Mon 10-Mar-14 09:20:31

The usualy "you don't want to spend the day couped up at home with your brother" spiel got DS1 out of his bedroom and into school, anyhow. He ran most of the way to school. He's going to be parched, as he only drank the bare minimum needed to wash his pill down.

LA panel are discussing him, again, today, now the case officer has the additional info they asked her for. I'm going to be nervously phone stalking, again.

ouryve Mon 10-Mar-14 09:23:51

Kamillosan is pretty much vaseline with additives, btw.

Oh, hell, moose sad flowers

hazeyjane Mon 10-Mar-14 09:40:30

Oh Moose, i don't know what to say, life is being a shit to you at the moment, I wish I had a magic wand.

I'd wave the magic wand over your ds as well Claw, or maybe use it as weapon to beat the other kids over the head with.

Sally brew

this is pretty good explaining low muscle tone. Ds has gross hypotonia (in all areas) and muscle weakness - his was severe when little - sat at 12 - 15 months, never crawled as the muscle tone in his arms was very low, walked at 28 months. His low tone also affects his swallow which is very slow, oro motor skills (mouth always hangs open) and his bowel motility. His muscle tone has improved a little, but his physio says he will always have low tone, and when he is tired it deteriorates, so that he can be unable to sit up or crawl up the stairs. He has had a raft of tests re his muscles - but I think that was a) because it was severe, and b) because he has other genetic markers, so they tested for things like SMA, which is degenerative. I think if the low tone signified any other problems they would probably have shown up by 6, but maybe worth asking physio.

Galena Mon 10-Mar-14 10:06:32

Oh Moose . Life is dealing you a pretty crap hand at the moment! (((hugs)))

How are you doing, summer ?

ouryve Mon 10-Mar-14 10:15:32

DS2 was always such a squidgy baby and toddler. He's quite a bit stronger, now and holds his back lovely and straight when standing, but tends to slump when sitting and becomes very floppy when even slightly under the weather. Poor boy spent his 4th birthday and the week after with a torticollis because he'd had a bit of a cold and slumped awkwardly. It was quite pitiful. I'm just glad he's so much stronger now. I've also noticed that he's recently started drooling a lot less.

SummerRain Mon 10-Mar-14 10:21:09

Moose, stress does awful things to relationships. Dp and I almost split up over the last few weeks too due to the stress and worry making us frankly horrible people to each other. I hope your dh comes round and you guys remain strong. Lots of love x

hazeyjane Mon 10-Mar-14 10:28:09

Galena, forgot to say, well done to your dd - I love Cotswold Wildlife Park - we are probably going on Saturday as a day out for dd1's birthday.

Ouryve - ds's drooling is back with a vengeance because there is a shortage of hyoscine nationally and it is being restricted to palliative care - we are back to changing his tshirt 3 times a day.

moosemama Mon 10-Mar-14 10:32:37

Thank you.

I don't think it is him if I'm honest, it's me. I have just had enough of everything now. I'm hard on myself for not being good enough, but also too hard on others for not meeting my standards. I can't do anything/everything, but when dh does the things that need doing I find myself furious because he hasn't done it 'properly', when really the anger is at myself for not having done it in the first place. He's not perfect, he's doing his best and what's at the root of it is anger towards myself, because he shouldn't have to be working full time, plus, at a new job, then coming home and cooking the tea, doing the washing and trying/failing to stay on top of the housework. This weekend I think I pushed him to the edge trying to give him an out, but the answer was basically that there is no out, not without doing even more damage to ds1's mental state and destroying the other two as well.

Dh isn't a talker, so he never says anything, but stomps and frowns his way around the house doing chores he resents and I end up absorbing all the bad vibes, but not getting the chance to discuss it. He didn't used to be like this, we used to talk all the time - until he had his head injury, two years before ds1 was born. It makes it feel like we aren't a couple, we just tag team parenting the dcs, with me being nothing but a glorified babysitter, just watching them till he gets home.

He suggested relationship counselling, but I know for a fact he won't speak and I'll ending doing all the talking, trying to compensate for his lack of openness. I don't want to go to counselling anyway. I just want to get off the merrygoround.

SummerRain Mon 10-Mar-14 10:36:28

Sounds just like dp and me blush

Try the counselling, I'm sure counselors are well used to having one party contribute less and might be able to draw him out. At the very least it might give you a safe platform to get your views across without it turning into a fight at home flowers

moosemama Mon 10-Mar-14 10:42:15

Thanks Summer. I just don't feel able to go to counselling at the moment. Just dragging myself out of the house to do the school run totally exhausts me.

Dh just called to say the HT, Head of Year and IM want to see us tomorrow morning, but I can't go. They would run rings around me in this state, so now I feel like I'm letting ds down as well, but I know dh isn't as clued up as me on SEN stuff and if I don't go I'll end up being cross with him for saying the wrong thing or agreeing to something I don't think he should have agreed to.

Anyway, you shouldn't be supporting me, you have so much on your plate yourself at the moment. flowers

SummerRain Mon 10-Mar-14 10:55:14

I can understand that, you're using all your energy just for basic functions atm, but do consider it for when you're feeling stronger. Trying to communicate with silent brooders like dp and your dh is difficult at the best of times and becomes near impossible in stressful conditions. He needs to hear from a third party that his silence is frustrating you and causing you to lash out and you need to talk things through so you can deal with your frustration and anger and start to make peace with the situation.

Can you go tomorrow but let him do all the talking, only interject if he's missed something or forgotten a key point but other than that just stay quiet and try not to engage. Easier said than done I know for 'opinionated' wink women like us but if you're afraid he might not manage on his own it might be best to physically be there to keep an eye on the conversation. Only you know how badly that will set you back healthwise though and whether it's worth the damage to you and your family if it knocks you back severely.

I'm ok atm, I'd much rather be supporting you than dwelling on my own shit right now. I'm feeling a lot better physically today so now I can finally start recovering

ouryve Mon 10-Mar-14 11:27:29

Agreeing with summer - let DH do the talking, when he can. Then sleep, afterwards, if you get chance.

I get frustrated with mine for disengaging. DS2 managed to lose his glasses twice, this weekend, on DH's watch. He only has the one pair that he'll wear, as he's still scared of the pair he fell and cut himself on. DH was almost surprised when I told him that he would be attending tribunal, with me - he couldn't understand why I wanted him there. Thankfully, he's beginning to jump on board a bit more with the whole process, but it's going to take some work to get him up to speed if we do get as far as a hearing. (Though, if I can achieve that, with him, then it'll help me to have everything clarified in my mind, as well, so he may be more useful than he realises, there!)

HugAndRoll Mon 10-Mar-14 13:44:36

Today I signed off a request for specialist ASD teachers to help the school support ds1 as his anxiety levels are getting worse. Fingers crossed they accept it and help.

Sorry to hear some of you have had a difficult day/weekend.

ouryve Mon 10-Mar-14 13:51:45

Hope something useful comes out of it, HugAndRoll. We've had the involvement of the autism advisory service, several times, in all. First time with DS1 to do the text book stuff. Second time to rip up the text book and try something else....

claw2 Mon 10-Mar-14 15:46:24

moose you are having a real bad time lately, hope things start to improve for you soon x

Hug good luck

summer pleased to hear you are feeling a bit better

Hazey thank you, kids can be so cruel at times. I didn't know what else to do other than to leave the park, so they couldn't take advantage of him any more.

Ds's counsellor has emailed me, in reply to do you think medication is a good idea email or should we just wait and see how he gets on.

She hasn't really answered my question, she has basically said yes you are right a psychiatrist is the only person who can medicate if deemed necessary. It may therefore be worth getting a re-referral to CAMHS. I understand that the waiting list is long and it all takes time but in the meantime, it may be worth getting ds on the waiting list.

Ds is already under CAMHS. I told her that in the email.

Then she goes on to say that ds is doing very well in therapy etc, etc, she has only been seeing him for a short time and he has engaged well and she thinks its important to allow him time to settle into his routines too.

Is that a yes it is a good idea or no give him more time?

SummerRain Mon 10-Mar-14 16:20:01

Claw, I think that response meant she doesn't feel comfortable advising you on the matter and thinks you should discuss it with his camhs psyche. She'd be opening herself up to backlash if she advised to to medicate or to withhold medication and has tried to sidestep the question.

PolterGoose Mon 10-Mar-14 16:39:50

claw I agree with Summer

Summer how are you today?

ouryve Mon 10-Mar-14 16:42:01

Agreeing with Summer, claw. It's not her place, professionally to say yes or no, even if she may have anecdotal experience.

I have good news, anyhow. LA have approved funding for DS1's Indi place grin

Fizzy wine on me gringringrin

DH's response was yay... which of these lightbulbs should we buy?... I guess you'll have nothing to do now. hmm

PolterGoose Mon 10-Mar-14 16:45:29

ouryve that's fantastic news, well done to you grin wine wine wine [chocolate]

ouryve Mon 10-Mar-14 16:50:14

I'm definitely having wine tonight!

And I suppose I can finish decorating this room, now we don't have the prospect of tribunal looming.

youarewinning Mon 10-Mar-14 17:04:00

Wow ouryre congratulations. I know your Ds1 loved the school too and really worked hard at his pre visits and tests etc.

moose I'm so sorry things are so shit ATM. Please don't be so hard on yourself because of your illness and difficulties. Your allowed to need help as much as the dcs. I totally get the 'only I do it right' frame of mind. I'm the same blush

summer hope your feeling a little better today?

claw glad you had a better morning. Shame about others at the park. It's heartbreaking when our children often allow others to dictate to them because they are so desperate to be included. sad

claw2 Mon 10-Mar-14 17:09:29

Well done Ouryve, that is brilliant news grin

and thanks Summer and others for the advice.

SummerRain Mon 10-Mar-14 17:28:36

Ouryve grin that's excellent news, definitely worth breaking open some fizz.

Polter and youare, I'm much better today thanks. Dp is still hovering and apparently I'm banned from leaving the house until he's convinced I won't pass out again blush but I'm feeling much more human. I'm even getting some study done finally.

PolterGoose Mon 10-Mar-14 17:34:18

Somehow I missed a page and a half blush

moose please be kind to yourself flowers are you getting DLA for you? I'm guessing probably not? Could this help you get some extra help in or buy stuff that would make life easier?

Galena Mon 10-Mar-14 17:35:30

Fantastic news, ouryve!

And summer, glad you're feeling a bit better x

Galena Mon 10-Mar-14 17:44:19

Hmmm, a question... DD entered Reception as a fluent reader. They started her on quite a low level of book, but swiftly moved her up to green book band. They explained they wanted to ensure she was understanding what she was reading, fine. I knew she was understanding it, but I don't want to be pushy. She read all the green books and then moved up to orange.

She's brought home a book today which is very much harder - I think they've got a gold book muddled up with the orange ones. She has read half of it incredibly well and with excellent understanding. Should I push them to give her harder books, or just leave her on orange as she is happy enough? I know it doesn't really matter in the long run, and she reads other books at home, and I don't know why it bothers me, but it does...

PolterGoose Mon 10-Mar-14 17:47:12

Galena I'd at least give a few more orange a go, there's no rush, she can continue to read more challenging books from home with you while she works through the school scheme. That's what I did and it has served ds well smile

SummerRain Mon 10-Mar-14 17:57:03

Galena, one of the difficulties in having a child who goes into school quite far ahead is that they are very susceptible to getting bored once the teacher runs out of more challenging material within that class. I've had it with Ds1 and it's only on the last year he's started to be challenged a bit again in school. In retrospect I wish he hadn't been on the higher level books as we ran out well before he left that class and he ended up with no reading. I think his boredom was definitely a factor in the other issues we had in school.

If she's happy enough on the Orange books I'd leave her on them and just keep letting her enjoy harder material at home in her own time.

Galena Mon 10-Mar-14 18:11:40

Thank you both... the voices of reason have said precisely what my head was saying! You are quite right... She's happy on orange, I'll leave her on orange.

ouryve Mon 10-Mar-14 18:24:22

The important thing is that she's enjoying the books, Galena. DS1 accelerated through the levels pretty fast, but some of the higher level books were pretty irrelevant to an immature 7yo. Particularly the blasted ORT books.

Just had an argument with DS2. We had M&S Chinese for tea and he was after my pork bones. The argument was something along the lines of "No bones!" "BO!!!!" "No bones, you can't eat bones" "Bo! BO!!!"

DS1 is a much happier boy than he was this morning, anyhow, though is disappointed that he'll still be at his current school for a little while until everything is finalised.

Jacksterbear Mon 10-Mar-14 19:14:58

ouryve that's great smile.

Summer glad you're feeling a bit less shit today.

Could I get your opinions please? We're having an increasing problem with DS constantly demanding food, and being extra aggressive and volatile when he hasn't eaten (either because he is told no, or because he says he's hungry but then refuses all options offered and won't make a choice about what he wants to eat). Today he hit and kicked me when I said no to a snack (I don't normally say no, but we'd been to dentist and he'd had a fluoride coating put in his teeth and dentist had said no eating for an hour). Often he will eat his meals in the day but then have several slices of toast, bowls of cereal, apples, yogurt, and pieces of cheese in the evening. (Weight-wise, he is very skinny but very tall - I think something like 99 centile height v 50 centile weight).

Anyway, I've been assuming this behaviour is mostly psychological in his part (ie linked to anxiety/control/impulse/comfort). And also that because he uses up so much energy with his constant hyperactivity, that he just needs extra calories.

But now I'm starting to wonder if there's something medical going on (diabetes? thyroid?). Any thoughts about whether this sounds "normal" (in the context of ASD/anxiety/SPD) or not?

SallyBear Mon 10-Mar-14 19:29:28

Jackster I'd definitely get that checked out. The only thing we didn't do was check ds4 for diabetes and I wish that we had. My paed is in India for a long holiday, so I will ring her and chase that up once she's back.

HugAndRoll Mon 10-Mar-14 20:10:50

Summer glad you're feeling a bit better today.

ouryve Mon 10-Mar-14 20:25:25

Children with ASD are often undersensitive to feelings of fullness and can be just plain pre-occupied with food. DS2 isn't so bad, but would eat his way through a whole pack of hot cross buns if they were left within reach (DS1 has only made this possible 2 days running!)

DS1 constantly asks for crappy food, though, and it doesn't stop unless we get him to eat something with protein in. Mornings are one long graze until I get up and make him an egg or sausage sandwich. Then in the holidays, he'll be nagging for food again by about 9:30. We've established snack times and stick to them quite strictly, within the limits (eg 10-11 in the morning, 2-3:30 in the afternoon and just the once each time!)

StarlightMcKingsThree Mon 10-Mar-14 20:30:09

Sign, I can't imagine SEN Governor or not, that I won't focus on SEN. It is what I know and don't believe it is something separate from the main activities of a school.

I would very much hope to help them and sell their cause to the Board, but they have to stop being defensive.

StarlightMcKingsThree Mon 10-Mar-14 20:32:21

ouryve

'DH's response was yay... which of these lightbulbs should we buy?... I guess you'll have nothing to do now. hmm'

I'm hoping your response was 'get a life and so I have booked a week long holiday to read a few books and relax'.

Congratulations!

StarlightMcKingsThree Mon 10-Mar-14 20:33:10

DS' joke:

What do you call a Hexagon, if you actually wanted a Pentagon?

A 'Haccident!'

ouryve Mon 10-Mar-14 20:42:12

I've told him he's not going to live that down, Starlight! I refrained from suggesting that we might have time now to get him evaluated grin

Love your DS's joke. Lovely word play!

PolterGoose Mon 10-Mar-14 21:05:16

grin at haccident

Jackster we've done similar to ouryve and have snacks at roughly same times. He dropped his morning snack a couple of years ago, used to have 3 meals and 4 snacks at one stage. Also when he was younger we worked out that he was a first part of the day eater so he had most of his calories by 2 and ate little after that.

Ds very happy tonight, he managed to feed 2 of our pond fish by hand 2 days running, very exciting grin

youarewinning Mon 10-Mar-14 21:22:49

DS has no interest in food when he's occupied doing something he wants to do - however will eat non stop when I stop the activity.

Therefore we now have strict - stop and eat - times. He is allowed to do nothing else during this time other than eat! (He can watch tv whilst snacking tho iyswim?) even then it had to be a balanced snack.

AliceinWinterWonderland Mon 10-Mar-14 21:29:27

Oh god. MIL passed away today. sad Devastated. DD is in bits (and her partner is with her). DS1 and DS2 don't know. I cannot tell them yet and there is no way either will cope with a funeral. It sounds awful but I cannot tell them until Friday after school so they have time over weekend to come to terms with it. This was very sudden - she's had some health issues, but nothing that hugely serious that we were aware of.

PolterGoose Mon 10-Mar-14 21:32:16

Oh Alice flowers

HugAndRoll Mon 10-Mar-14 21:46:27

Oh no Alice sad.

SummerRain Mon 10-Mar-14 21:50:42

I'm so sorry Alice, are you ok?

Don't feel you have to tell them just yet. When Dps father died last year we waited to tell the kids as dds first Communion was two days later and she would have been too upset on the day. We waited til that was over with and told them the day after. Ds1 was difficult as he doesn't grasp that things are upsetting to other people and kept laughing and asking dp really inappropriate questions. Ironically he was dxed the next day, the day before the funeral (I still don't know how dp coped that week)

Is there anyone who can take the boys so you can meet up with dd and give her a hug? flowers

ouryve Mon 10-Mar-14 21:57:33

Oh, Alice sad

And such a long time to have to keep it all shut up from the boys, too.

Hope you can take care of yourself a bit, this week x

youarewinning Mon 10-Mar-14 21:58:13

Oh Alice I'm so sorry. thanks

hazeyjane Mon 10-Mar-14 22:20:28

Alice, I'm so sorry. thanks

AliceinWinterWonderland Mon 10-Mar-14 23:18:47

Thank you. DD and her partner just left - they stopped by for awhile to make sure I was okay, so we chatted quietly without waking up the DCs. I'm one that "compartmentalises" to some extent, so it'll have to "go in a box" for a few days.

Jacksterbear Tue 11-Mar-14 08:16:39

Alice sad I'm so sorry. Hope you managed to get some sleep.

Thanks for the replies about the food issue.

youarewinning Tue 11-Mar-14 08:30:13

Made the mistake of asking DS a question this morning - apparently one I've asked before - for a double whammy about what he did and how he felt about something.

Went off to breakfast club in a great mood hmm

ouryve Tue 11-Mar-14 09:21:47

How very dare you, youare

This morning was a lot calmer than yesterday morning, but DS1 has forbidden me from sharing our news! So I'm just going to have to tell his 1:1 very subtly, while he's attempting to mug the lollipop lady for pennies, that I won't be needing her diary.

StarlightMcKingsThree Tue 11-Mar-14 09:27:44

So sorry Alice!

StarlightMcKingsThree Tue 11-Mar-14 09:30:24

When DS was 16months, the children' centre had a party and we were told to bring our kids favourite foods to share, and that for a one-off healthy foods were not necessary.

I took Olives, naturally, without a second thought.

They didn't put them out sad

ouryve Tue 11-Mar-14 09:42:13

DS1 quite liked olives when he was that age. He now thinks they're disgusting, mind - he doesn't like strong flavours at all, any more, though he used to crave them when he was little

claw2 Tue 11-Mar-14 10:09:54

Ive just had to pick ds up from school again, after school phoned. He had stomach pains, feeling sick, pains in his legs etc. When I got there he was asleep in the medical room, woke up crying, clutching his stomach and saying he couldn't breathe.

He is home now and feeling better already. This is the second time. Im not sure whether it is a medical issue (abnormal blood test results for liver and haemoglobin) anxiety related symptoms or whether ds has just cottoned onto being sent home, if you say you don't feel well.

I have booked a GP appointment for later today to be on the safe side.

ouryve Tue 11-Mar-14 10:20:47

oh, poor boy. Fingers crossed, claw.

claw2 Tue 11-Mar-14 10:26:58

Thanks Ouryve, he just isn't himself and hasn't been for a while, im just not sure whats causing it or maybe a combination of things.

StarlightMcKingsThree Tue 11-Mar-14 10:40:01

Do you think that he could benefit from a half term half term?

That is, 3 days (Tue-Thurs - or even a whole week if needed) guaranteed break half way through his half term to break it up and so, on a calendar he can kind of work up/down to it?

AliceinWinterWonderland Tue 11-Mar-14 10:52:03

It's official. My life is in utter free-fall.....

ouryve Tue 11-Mar-14 10:59:10

That's what we did with DS1, last half term, though he did work his socks off at home. It gave him enough of an emotional re-boot to get through the last couple of weeks or so, with slightly less angst.

ouryve Tue 11-Mar-14 11:00:01

Oh no, Alice. Your ex, again? brew

StarlightMcKingsThree Tue 11-Mar-14 11:03:44

Oh Alice are you okay?

AliceinWinterWonderland Tue 11-Mar-14 11:04:53

Let's see.. here's a wrap up... it wasn't his mother that died, it was his sister. He's back in town, after cancelling his last visit with the DCs due to illness, turns out he just was staying longer out of town with his "fiancé." Now he's back in town, but has texted me to say he will be moving out of town (London) with girlfriend and has cancelled visits with the boys again this week due to all this. So basically he'll be abandoning the boys, thank you very much. I personally am at the point where I don't care if he falls off the planet, but the DCs will be devastated, because now I will have to explain WHY he is moving away and won't be seeing them, because despite his shitty treatment of them, he is their dad and they love him. And who gets to deal not only with the fallout, but will also most likely end up looking out for his elderly mum who will be living alone? (although I love her dearly, I wasn't anticipating additional care duties) Me. Because I need more pressure.

AliceinWinterWonderland Tue 11-Mar-14 11:05:51

How much more can he possibly think of to throw at me? Seriously? I've got major dental work later this week and I'm debating cancelling it and rescheduling as I am not sure I can cope with the stress right now.

AliceinWinterWonderland Tue 11-Mar-14 11:10:45

I've cancelled the dental work and will reschedule in a couple weeks. It's at least one stress I can limit.

ouryve Tue 11-Mar-14 11:17:05

Oh, he's just delightful, Alice. Good thing you hadn't told the boys, but your poor DD is probably going to be as bemused and angry as you are.

Unless it's going to make a massive and almost immediate improvement to your quality of life, do postpone the dental work. As you're so stressed, your immune system is also likely to be at low ebb and that might affect healing and recovery.

I suspect that once you've got over the hump regarding him moving away, it might actually make life for you all simpler and less uncertain without all the wondering if he's turning up, this week, and whether he'll behave appropriately around them.

ouryve Tue 11-Mar-14 11:17:37

X-posted, there!

AliceinWinterWonderland Tue 11-Mar-14 11:21:14

because he's moving, he will be leaving his job. No child support as well, as he won't have the money to pay for it. And he'll expect me to be checking on his mum - which means whenever there's a problem, he'll contact me.

Galena Tue 11-Mar-14 11:22:07

Oh Alice... what a waste of oxygen he is! Very wise to reschedule the dental work.

AliceinWinterWonderland Tue 11-Mar-14 11:31:59

my head is banging and I feel nauseated. I cannot imagine getting through dental work, so it's self-preservation at this point.

claw2 Tue 11-Mar-14 12:44:37

Star just got back from my GP, who examined ds and confirmed its nothing medical and he asked is ds under any stress, being bullied at school etc. Ds told him im 'extremely stressed at school' and that he feels like this most days. So GP has concluded stress related symptoms and speak to school about reducing stress. Ds has a follow up blood test at the end of the month, to check on previous results, but GP doesn't feel it is related.

I think he would benefit a great deal Star from what you say. Its just getting someone to agree with me. Especially given ds's previous 'school refusal'.

AliceinWinterWonderland Tue 11-Mar-14 13:53:17

Okay. I have eaten a decent lunch. Cried a bit in frustration. Walked around the house, first saying every bad word I could think of, then moving on the "He can FTFOTTFSOF and when he gets there he can FOSM" grin and then moved on to "hmmmm... what DIY and redecorating should I do in this room?"

I feel better. I've stressed, I've slightly fallen apart a bit, and now I'm in control again. I will be damned if I'm going to let him tear me down any further. Life only gets better from here.

I have a few things I will be speaking to a solicitor about tomorrow, and I'm going to remain positive. This is a good thing in disguise.

ouryve Tue 11-Mar-14 14:22:45

Decorating sounds like a plan. Make the house completely your home.

moosemama Tue 11-Mar-14 14:49:07

Alice flowers Shall we go and hide in the corner together with a large bottle of wine?

Claw, poor ds. That's yours and mine out of school with stress due to bullying then. sad Ds1 is much better, symptom wise, now he's on day 5 away from school (including weekend) but still gets really distressed when school is mentioned. He won't be going back tomorrow, as the IM says he can't come back to us with a plan of action re the bullying before then. Dh met with them this morning and they were shocked at some of the stuff that's been going on. Dh had a chat with ds about it all and recorded it on the dictaphone and ds was able to enlighten then on a couple of incidents that had happened to other pupils that hadn't been reported.

No further movement with dh and I, as we've had no time to talk since the weekend.

SummerRain Tue 11-Mar-14 14:50:33

Alice flowers good stuff, don't let the insanity of his life impact you anymore. I like the sound of decorating, what are you planning?

I'm trying to get course work done and freaking out a bit at how far behind I've fallen with everything that was going on. Need to pull myself together and stop panicking so I can get it done.

ouryve Tue 11-Mar-14 14:51:17

Glad they're finally pulling their heads out, moose and that your DS felt able to speak up.

ouryve Tue 11-Mar-14 14:52:41

Summer, from now on, until it's done, whenever you appear here, you'll be handed brew and cake, given a hug and sent packing wink

SummerRain Tue 11-Mar-14 15:13:50

ouryve grin

Bilberry Tue 11-Mar-14 16:24:34

Alice - so sorry to hear what you are going through. I can understand why you have put off the dental work but compared to everything else that is going on lying on a dental chair getting root canal might be relatively relaxing wink!

I would like a little boast - ds has just gone to the toilet and done a wee and a poo without me telling him! grin. I've made a big fuss and he got a Lego 'prize' he has been promised for the last year should he do so. Fingers crossed this is the start of something new!

moosemama Tue 11-Mar-14 16:27:52

I'm not convinced they're actually going to sort it all out yet ouryve, I'm reserving judgement.

Ds only spoke up because we snuggled him up under a duvet with his favourite cuddly and made sure he felt totally safe. He still won't speak to school about it all.

Have spoken to Parent Partnership today who have given me a bit more info about the disaster between our LA and school. It's a right mess. Apparently they're not sending any more pupils there after this year, after a long and successful relationship with the school. Meaning there are now a whole cohort of ASD pupils in our LA with no secondary placements. They are supposed to be opening an ASD school within the borough in the next couple of years, but apparently no-one can agree the range/type of ASD it will be able to support.

PP and LA are both going to attend AR, if we manage to get the school to get one set up before May. hmm

moosemama Tue 11-Mar-14 16:28:32

Way to go Little Bilberry! grin

ouryve Tue 11-Mar-14 16:32:10

Well, DS1 had a so so day that involved not eating any lunch because it took 0.48123 seconds too long to find his lunch bag that he'd left lying around.

Crossing my fingers that he can be persuaded to try the lunches at his new school, rather than hiding with a lunch bag.

ouryve Tue 11-Mar-14 16:33:35

And that is a most excellent achievement, bilberry!

SummerRain Tue 11-Mar-14 16:34:05

Oh moose, what a disaster. It's terrifying how new management cam totally change the ethos of a school. I really hope something works out sooner rather than later for you guys... Maybe the la will push forward the asd unit in the borough if they're desperate enough?

Don't throw cake at me Ouryve, I'm having a quick fag before tackling dinner... I've been working since I last posted I promise wink

SummerRain Tue 11-Mar-14 16:35:06

Oh, bilberry, I forgot to say congrats! Fingers crossed he'll keep at it now you've had a breakthrough grin

PolterGoose Tue 11-Mar-14 16:44:27

Well done mini-bilberry grin

brew and cake all round

I've come home from work early because of this pain, co-codamol helps a lot but makes me spinny so thought I'd time my departure when a dose ran out so I was safe to drive.

ouryve Tue 11-Mar-14 16:47:46

Hope DS gives you a quiet evening, polter

Bilberry Tue 11-Mar-14 17:00:40

Moose, did you have a meeting today? I keep missing the important bits when I'm reading these threads blush. Sounds like the school has really gone down hill sad.

Bilberry Tue 11-Mar-14 17:03:07

Thanks everyone - you lot are the only ones who understand the significance of a trip to the loo!! grin

StarlightMcKingsThree Tue 11-Mar-14 17:07:12

Oh no I feel terrible. I sent them an email suggesting they'd rather have me pissing out than in, and their preffered know-nothing has offered to step down and now I feel like a big hairy bully! sad

Galena Tue 11-Mar-14 17:08:12

Well done mini-bilberry.

Summer - get back to work! grin

Moose, I bet you can see DS visibly unwinding as the days go on. Poor lad - but hopefully if the school have been shocked by the revelations, they will be forced to act.

Alice, have fun planning the redecorations.

DD has been on a trip today without me... She had a ball and didn't throw up on the coach - result! And I managed not to fret all day.

StarlightMcKingsThree Tue 11-Mar-14 17:08:19

Hooray for BilberryBoy!!!

StarlightMcKingsThree Tue 11-Mar-14 17:10:09

Moose So sorry I haven't commented. I'm following your story with a shock face. It never ends does it?

AliceinWinterWonderland Tue 11-Mar-14 17:13:06

bilberry it wasn't root canal - it was oral surgery - cutting out a tooth from the lower jaw - which would be quite painful for a few days (and swollen possibly with stitches), and I'm very nervous/stress as it is at the dentist, so this was beyond my coping skills at the moment.

youarewinning Tue 11-Mar-14 17:22:23

I still laughing at the olives not being out out. My DS used to eat them and also loads of curries etc from about 10 months old - not he even refuses sausages except hotdogs because I dated give him one with some herbs in a few months back. grin

Moses - sorry things are still shit. Great that you managed to get ds to open up though. I love the wrap up idea and will be adopting that myself.

Alice - <sigh> sorry to hear things are tough but I agree eventually the him moving away may be a positive thing. It's about time he stopped promising the boys he'll turn up and then not.

Galena - well done your DD.

Summer - if your reading this you shouldn't be grin says me who also has an assignment due!

Polter - hope you feel better soon.

Bilberry - that's brilliant grin

Hope I haven't forgotten any one. Oh ouryre - I've not messages you but that's good DS has been a bit calmer this morning.

Oh and claw- I've also had the stomach aches thing with DS. It's also been stress and that he knows it gets him sent home. I've hated having to say he's fine etc and I'm sure the school think I'm a bitch or prioritise work over DS. (I don't but I know him well)

youarewinning Tue 11-Mar-14 17:23:54

Star - never feel like a bully for doing what is best thanks

signandsingcarols Tue 11-Mar-14 17:46:54

just nipped in for acatch up, sad moose, alice and ouryve,

star, wouldn't worry, you are going to be best person for the job, (and as you say better inside pissing out.... )

must dash as iff to governers meeting.. will catch up and read prperrly later

PolterGoose Tue 11-Mar-14 17:53:21

youare I am extremely I pressed with your keeping up on the thread smile

Ds has been surprisingly fine this evening, I don't usually get home on Tuesdays until his bedtime and previous times when I've got home early he's been very angry, so I'm pleased, we keep getting these teeny glimmers of progress which make me think what I'm doing is working, slowly but surely.

moosemama Tue 11-Mar-14 17:54:44

Bilberry, yes, dh went in to face a firing squad of several members of staff this morning. Unfortunately I'm still not well enough to attend meetings myself.

The meeting was only to discuss the bullying, as we had emailed to inform the school that ds was doing better and we want to get him back into school, but not without them detailing and agreeing to a specific plan of action to ensure he's properly supported and protected.

Bullying bit seemed to go ok, but then as dh went to leave the IM just said - out of the blue - "You know, we are already providing ds1 with over and above the content of his statement Mr Moose." angry He knows that simply isn't true, but his tactics seem to be to try and get us riled so we snap and shout or act unreasonably and then I suppose they can ask us to leave or at the very least claim that as proof that we are unreasonable. Dh said he just didn't respond or rise to it and left - good job I wasn't there, as the mood I'm in at the moment I'm not sure I could have kept my cool as easily.

It helps knowing that it's not just us and he's using the same tactics - and lies - on several families from the same LA. At the same time it's just horrible not knowing what the outcome of all this is going to be and whether ds might end up with no school at all and losing all the friends he's made there. He'll never forgive us if that happens.

Star - we just seem to be one of those families that things happen to. hmm grin It's always been the same. My school friends used to say my family's life was like a non-stop soap opera! blush

Youare, the only time we ever get him to 'talk' is bedtime and we usually incorporate it into his bedtime routine, but this time, as ds2 needed to sleep and they share a room, we actually did it in our room, which is a big treat (because I am too much of a grouch not keen on dcs coming into our bed). The first thing you hear on the tape is dh asking if ds is comfy and happy to talk with the tape on (we'd already explained why we were doing it) and ds responding that no, actually he wasn't comfy because he was lying on his own arm and he's heavy. grin

The tape wasn't for evidence by the way and wasn't played to the school, it was just used so dh could type up a timeline of events by talking dh through his school year so far.

Alice, so sorry things are so rough at the moment. Agree with others though that him moving away may turn out to be really positive for you and your dcs. I know, as a child, I found it so much harder on the days I was expecting Dad to turn up and spent the day sitting on the window ledge watching for a car that never came, than I did when he moved away and I knew he wasn't coming.

NoHaudinMaWheest Tue 11-Mar-14 18:12:00

Bilberry that is a major acheivement of your ds's. Don't think my ds has managed that yet. He is 17 but does have OCD issues around toileting as well as ASD ones.

Moose I don't know what to say. The school situation sounds a complete nightmare.

Alice great you've managed to find some positivity in a difficult situation.

Polter sorry you're still suffering.

HugAndRoll Tue 11-Mar-14 18:26:20

Hooray mini bilberry.

Ds1 was on the edge of a meltdown after school and has been in his room since we got home and hasn't come out. I think they have a substitute teacher at the moment as I haven't seen his class teacher but have seen someone I've not seen before. I think it's stressing him out but he won't talk about it sad.

Sorry and cake to everyone having a hard time. This thread makes me realise how much easier we have "it" than a lot of you.

AliceinWinterWonderland Tue 11-Mar-14 18:29:34

Yes, I'm going with "at least now I don't have to do the stress out over the contact centre and such." And yes, he's cancelled on them more than he's seen them in the last month, so now they're not even expecting him to show up anymore (and they don't ask about him or when he's going to visit). My home is mine again, and that's actually a relief.

PolterGoose Tue 11-Mar-14 18:34:37

Alice you're awesome flowers

ouryve Tue 11-Mar-14 18:36:58

Alice - I've had that done and you're wise to postpone. The mouthful of embroidery was bloody painful (I guess you have curly roots, like me).

Moose - actually grin at the comment about laying on his arm. That's something DS1 would say.

I had a big box full of nappies delivered, today, so the boys have been in their element, playing with the boxes.

AliceinWinterWonderland Tue 11-Mar-14 18:43:52

ouryve - curly roots grin Yes, I do. The regular dentist tried to remove the tooth in November, and only managed to break it up and wrench my jaw. He then had to refer me to oral surgeon and seal it over. So it's a little painful, but tolerable. My mum apparently had this problem when having a tooth removed as well. Ouch ouch!!

Polter thanks. Not really, but I suppose just like in all the SN stuff, we just reach that point where common sense kicks in and we have to just get on with things and go with the positives. Otherwise we'd all be insane. And we're not, right? right!?!!? grin

AliceinWinterWonderland Tue 11-Mar-14 18:44:58

moose how you and your DH are maintaining your composure over the continued nonsense from that school is beyond me. They really are taking the piss, aren't they? hmm

PolterGoose Tue 11-Mar-14 18:57:17

Alice grin

moose I'm a bit in awe of you too, I would not be able to be so composed, so hope things get sorted for ds flowers

I've got curly roots too, after a horrible experience I didn't go to dentist for close to 20 years and finally went to the community dentist, who worked out that the reason I'd had bad experiences previously was because of both the 'hooked roots' (as he called them) and because I'm really hard to anaesthetise (which is apparently common if you're hypermobile). Things have been a lot better since. Apparently he'd worked in South America and the hooked roots is commoner there (I have part Argentine heritage)

hazeyjane Tue 11-Mar-14 19:04:07

Moose and Alice, your combined stoicism is indeed awesome. Please look after yourselves too.

I am all aglow with ds's first attempt at a word, tomorrow I will stop asking him to 'say mama' blush

Well done to your boy, Bilberry.

PolterGoose Tue 11-Mar-14 19:08:44

hazey revel in it, it is fantastic and made me smile at work and want to shout it out - but I resisted grin

ouryve Tue 11-Mar-14 19:30:45

Your DH has traine dhim well, btw, Hazey! DS2 used to screech daddeeeeeeee!!!!! all the itme, but has never ever sad mum, mummy or anything even sounding like it.

He can do a good approximation of his brother's name when he's really pissed off with him, though grin

youarewinning Tue 11-Mar-14 19:37:49

ouryre grin I guess DS2 feels that's the only time he needs to use his brothers name!

Have any of you heard the silent 5yo and salt joke? It's actually only fairly funny but really resonates with the language use of those with asd.

hazey that's fantastic Of DS - I bet you all in a tizzy now!

NoHaudinMaWheest Tue 11-Mar-14 19:46:57

Now it my turn for life to go belly up. Dd has deteriorated massively. Details on my 'I'm sure there's a way out of this mess...' thread in SN Children.

ouryve Tue 11-Mar-14 19:47:42

I've not heard it

But I can see expletive thought bubbles coming out of DS2's head, while DS1 sticks sticky tape to him and mucks about with his nook. That'll be the DS1 who has his jammie top on backwards and insists it's correct - with a git big picture on his back! There we go - DS2's just turned round ot him and said "derr derr derrrr" in a warning tone of voice, probably meaning don't. He has go away and shut up in his vocabulary, too. All the important stuff!

ouryve Tue 11-Mar-14 19:48:33

Oh hell, NHMW sad

I'll go have a read.

AliceinWinterWonderland Tue 11-Mar-14 19:59:02

oh no NHMW I'll go look now

moosemama Tue 11-Mar-14 21:03:19

I'm not composed at all really. Just don't want to make a bad situation worse and give them the excuse they want to blame us.

I'm another one with hooked roots that doesn't respond to anaesthetics and am also hypermobile. I have three broken teeth that I won't go to the dentist about. Like others, I had awful experiences at the dentist as a child/teen and just can't face it. I did go for a root canal while I still had my maternity cert after having dd - but it was a miracle I didn't leg it out of the chair and I never went back for the crown. The temporary filling fell out a couple of months ago and I'm ignoring it, hoping it will go away. blush

Mini-Hazey Fantastic, you clever lad! That has really cheered me up. smile

NHMW, will go and find your thread.

Bilberry Tue 11-Mar-14 23:49:27

Moose I finally caught up with the end of the G&C thread last week and now understand blush. What a time you have been having! It must be awful to feel trapped in that situation. Evan if they sort it out with the LA, your trust in them has gone. Well done to your dh for keeping his composure.

Bilberry Tue 11-Mar-14 23:55:08

Alice your dental work sounds yuk. Yes, you need to have some time to pamper yourself after that!

I can understand why you are so furious with stbxh letting your dc down so badly. However, I agree with others that it will probably make your life simpler and give you the chance to take control.

claw2 Wed 12-Mar-14 08:31:24

Sorry guys for grabbing advice and running, ive had my hands full.

Moose I dont think some people realise just how crippling and debilitating anxiety actually is. In school when ds is breaking down in tears, he is being told to 'man up' and it just isn't very helpful to him at all. He is then getting stressed about that. He tells me he wants to 'man up', he tries to 'man up', but he just cant.

With ds I will say, that he isn't always necessarily bullied by others. Sometimes its a case of him being extremely sensitive or him just not understanding unwritten rules, struggling with social interaction or not actually understanding what is being said. Then sometimes of course, the case of actual bullying or kids being mean. So ds feels totally persecuted all of the time. Do you think your ds is the same?

Ds has gone in today, after being sent home yesterday, his symptoms quickly disappeared once at home. This morning, he has stomach pains again. He describes it like 'being on a rollercoaster and your insides being pushed up' and 'making it hard to breathe'. Yesterday he was only in school for 15 minutes before I received a call. We will see how today goes.

The sad part is that I haven't informed school yet, as soon as I mention that symptoms are anxiety related, they will then not phone me and try 'coping' with it.

ouryve Wed 12-Mar-14 09:35:00

Sounds like he's having full on panic attacks, claw sad

PolterGoose Wed 12-Mar-14 09:55:15

claw sad

moosemama Wed 12-Mar-14 10:04:26

Claw, I've lost count of the times we've been told that ds should be coping, as what he's upset about is normal pupil banter. hmm Never mind that he has major anxiety issues and for him it is a problem, we won't bother supporting him because other kids don't need it to cope. AAAAARGH! Yes, that's precisely the bloody point - and why he has a statement, because he needs support over and above what's normally provided by schools.

Yes, ds1 does sound very similar to your ds. This time there has been a combination of direct and deliberate intimidation by one child and to a lesser extent another lad, but also him witnessing both lads really bullying other pupils and that pushing his anxiety through the roof as well, as he's constantly worrying what they might do next.

We have also had lots of situations where he's misread the situation and reacted badly to something that other kids would have brushed off or even laughed about. BUT if he hadn't been supersensitised by being bullied in the first place and if the school were giving him the right support to help him handle these situations, he would be coping. Once the other school started doing the things they were supposed to he was fine, it has only ever been when he hasn't been properly listened to and supported that this has happened.

He is also very similar in that once he's home his symptoms taper off and he starts to relax. Ds has gone from headaches and migraines with horrendous diarrhoea last Thurs/Frid to being much calmer, diarrhoea stopped and just looking very pale and exhausted. He also described chest pressure and being unable to breathe at school last week and ended up using his inhaler several times, when I know his actual chest isn't bad at the moment. With on particular incident with the other lad, that triggered his phobia/OCD stuff he had a full on panic attack and needed his inhaler to help him breathe. This is much worse than he ever was at primary, but he feels like he has nowhere safe to run to and no-one who will help and protect him while he's there. I had agoraphobia as a teen and know what it feels like to be in that much distress. and it breaks my heart to think of him panicking, terrified and alone. As a friends said to me on the school run this morning "it makes you want to just scoop him up take him home and keep him safe from it all". sad

I will be keeping everything crossed today is a better day for your ds.

We are supposed to be hearing back from the school about their plans to keep ds safe and what is being done about the bullying today. If they do come up with the goods ds1 should be going back tomorrow. The only saving grace is that's it's just two weeks until they break up for Easter and then he's off for three weeks anyway.

moosemama Wed 12-Mar-14 10:07:06

Blimey, please excuse all the errors in that post. blush

claw2 Wed 12-Mar-14 10:25:11

It does, doesn't it Ouryve. He is also breaking down in school several times a day, not eating in school etc. He cant go on like this, something needs to be done. I am waiting for CAMHS to phone me back. The biggest pain in the arse is that no one wants to 'advise' on what to do. School counsellor cant, CAMHS try to say its a school problem sort it out with them. GP says the same. Then if I make suggestions, it has to come from a professional or be backed up in some way. All red tape bollox.

On a positive note, at least school are seeing what is going on, instead of burying their head in the sand and denying it exists. But they just don't have the expertise to deal with it and need expert input.

claw2 Wed 12-Mar-14 10:30:57

Moose I think at the very least ds's school should be giving him somewhere quiet to retire to, when he is feeling overwhelmed, instead of being told to 'man up'. Makes my blood boil.

I really hope you hear from school with their plan, its really not on to let children suffer in this way.

SallyBear Wed 12-Mar-14 10:51:27

Moose. Is he having panic attacks? I think that you're going to have to think about moving him. It's sounding like an intolerable situation. What have either of the LEAs said? Can you contact Parent Partnership for advice?

PolterGoose Wed 12-Mar-14 10:58:24

"Man up" gives me the rage. First, it is a completely inappropriate thing to say to a child. Second, it perpetuates gender stereotyping nonsense where men are valued for being strong, emotionless, controlled (unlike us pathetic emotion-riddled, feckless women hmm)

claw2 Wed 12-Mar-14 11:18:25

It is wrong on so many levels Polter. I have emailed school today, telling them what GP concluded and that ds is finding being told to 'man up' by some teachers very unhelpful.

The other comments that gets me is 'stop being silly'

SallyBear Wed 12-Mar-14 12:22:25

Which is all roughly translated as 'I don't know what to do with you mini-claw!' They should stop putting the onus on him and put their heads together to come up with some strategies to help him.

zzzzz Wed 12-Mar-14 12:33:50

I'm dancing in as I have only skimmed to say

YAY for littleHazey and VIDEO EVERYTHING I would literally kill for a video of ds1s early words. HONK HONK HONK grin

ok overexcited in Devon will calm down.

I have a strange love of "man up" as a phrase, but I dont use it any more because I know polt is right and it is only bad side that enjoys it (and she knows where I live grin )

I had a paper-cut day yesterday. Someone asked me not to let ds walk on their bank (very thin lane and it our favourite part of the day as he is safe from the traffic and so doesn't have to hold hands and he is very tall like Daddy). She wasn't horrid or anything but ds wailed he was so sad and he will be sad every day when we walk past it. It is of course just one of those things but I was in floods all evening because sometimes his life is just SO shit. sad

He was very good this morning but he held my hand very very tightly and was a bit shaky.

zzzzz Wed 12-Mar-14 12:36:51

I should probably explain that I find ds1s disability ok, but it is a bit like "death by a thousand paper cuts", it just up and is awful at the strangest moments.

We have had a good day teaching wise today though we are still years behind.

claw2 Wed 12-Mar-14 12:39:13

I know Sally, they have the resources of OT, SALT and counsellor to call upon. In fairness to the school they are trying very hard and I was told before he was accepted at this school that they didn't know if they could meet his needs due to the level of his anxiety. Although he was accepted, with a crap statement which didn't identify his needs and after some trial days, which didn't really show the 'real' ds.

Although what ds is going through at the moment sounds terrible, it is actually a step forward for ds. He was previously bottling up all his emotions and internalising by quietly self harming to deal with his emotions. Now he is externalising, the self harming has decreased and other people can see he is distressed.

HugAndRoll Wed 12-Mar-14 12:50:33

claw I hope school sort themselves out soon, there is no way you and ds can go on like this.

moosemama Wed 12-Mar-14 12:51:03

Ds1's school haven't actually said 'man up' but they've said just about everything else to imply that he is just being a wimp.

Sally We have contacted LEA and discovered there's some sort of fight going on between them and the school. They told us what it was about, but others have been told something different. Upshot is our LEA isn't sending any more pupils to the school, starting this year and the school has been a total arse with all pupils from our LEA and is not supporting any of them properly. Both the LEA and PP have been inundated with complaints from parents.

Unfortunately, the LEA have told us straight, there simply is no alternative provision for ds or any of the other pupils from our LA at the school. They were all put there because of the huge gaping gap in provision in our LA for academic ASD pupils.

PP said they haven't been fully informed about what's going on by the LA, but have had lots of parents with similar complaints to us coming to them over the past few weeks.

Haven't heard from dh, so am assuming no news yet. Dh has been texting ds to ask a few things about some of the incidents, so I could be wrong and they might be contact dh for more details as they investigate. Hate being kept in the dark though.

zzzzz, poor ds. Did she give you a reason why she doesn't want him to walk on it or was she just being 'it's my bank and I don't want him to'? If she wasn't nasty, could you maybe pop back when he's not with you and explain to her about why he does it and how badly it's going to affect him not being able to?

SummerRain Wed 12-Mar-14 13:03:53

NoHaudin, i'm sorry to hear your dd has deteriorated. I hope you have some success with the school soon and she can go back soon. flowers

I have to face the world today, I've been hiding at home in my pjs since last week but have to get dressed and speak to people today. Dreading it, just want to stay hidden in my hole for a while longer.

claw2 Wed 12-Mar-14 14:25:32

Thanks Hug, im still waiting for CAMHS to phone back and no phone call from school, which isn't necessarily a good sign. Ds will just come home crying in the taxi and tell me he has been crying several times in school. He asks his TA can he come home all the time, so no doubt they will be trying to get him to stick it out. Ds did say that Wednesday is the best school day for him. The lessons are longer, so less moving from class to class, teacher to teacher and he has a teacher who he is particularly fond of.

Moose seems we have a similar problem, there are no other schools in this area for potentially academically able, with quite severe emotional difficulties etc. We have some special schools, who tend to cater for more externally challenging behaviours. Ds is so quiet and withdrawn, it would cause him more distress. I am also very reluctant to move him yet again.

Summer big hugs to you

moosemama Wed 12-Mar-14 14:31:06

No contact from school here either.

Does sound like a very similar position. We have specialist schools for EBD and mod/severe LDs, but nowhere that would suit ds either academically or in terms of managing his anxiety around other pupils with challenging behaviour.

PP told me yesterday that they felt our LA had pushed some children into ds's school when it clearly wasn't the right placement for them, simply because there was nowhere else for them to go, due to a massive provision black-hole in our area.

Moving our boys isn't the answer, all that change just makes everything worse, what they need is proper support to enable them to be in the right state of mind for learning. It's not too much to ask, is it?

ouryve Wed 12-Mar-14 14:43:30

I think there is very little provision through the whole country for pupils with this general profile, unfortunately. Some counties have bases or units within MS secondaries, but, from the reading I've done, I don't think they fill the gap, either, as the whole school environment is still one that causes stress in a socially anxious child with sensory processing difficulties and staff aren't always sufficiently trained and experienced to deal appropriately with a child on the edge of meltdown.

claw2 Wed 12-Mar-14 15:01:16

Oh well just had a phone call from school, can I go and get him he is too upset and distressed to wait until 3.30

SummerRain Wed 12-Mar-14 15:24:05

Oh dear claw sad

PolterGoose Wed 12-Mar-14 16:12:09

How is he claw?

School crap here too, ds was pulled from the one lesson he was looking forward to today to do a practise L6 SATs paper, he was so furious he hit another child. Another mum has confirmed that he is being regularly 'baited' by other children. Have sent stern email to teacher.

claw2 Wed 12-Mar-14 16:31:06

Just got back, ds tells me (in front of the TA) that he had been crying since 1pm and was taken out of class. He told his TA that he doesn't trust him because he didn't care if couldn't breathe and was choking.

In the car on the way home, ds tells me he hadn't stopped crying since after lunch and it was only when he became hysterical and started screaming 'I want to go home, i want my mum' that I was phoned.

TA told me that he told ds that he didn't plan on making a habit of calling me. My reply 'what is the plan then'. He was totally stumped. So I made some suggestions and told him to think about it and email me with a written plan.

NoHaudinMaWheest Wed 12-Mar-14 16:32:50

Claw and Moose I have nothing useful to say but hugs for you both and your dss (if that is comforting for them.)

Polter How do staff not notice the baiting? It is not as if it is an enormous school. Also baffled as to why they don't get ' don't spring unexpected changes'. It is pretty straightforward and practice for a test is hardly unforeseen circumstances.

I have my reply to my complaint about ds's SS case being closed. I am working up the strength to read it.

claw2 Wed 12-Mar-14 16:33:32

Polter, children can be so bloody cruel at times. Its a vicious circle, they see a weakness or a difference and they home in on it. It reminds me of when you see a flock of birds, all picking on one in particular, for no apparent reason.

SallyBear Wed 12-Mar-14 16:43:53

TA sounds clueless, claw. TA needs a course on managing behaviours, because clearly it's something he could do with going on. How old is your DS? Seriously why would anyone leave a child crying for that long??

PolterGoose Wed 12-Mar-14 16:52:51

I don't know how they don't see it, I guess a big part of the problem is that ds's peers are so much more socially advanced than him that they can pick their moments and keep it just under the radar, it's not necessarily stuff you'd automatically see as a problem unless you understood ds, last years teacher was really good on this particular issue. Current teacher is just useless. It was such a relief when this other mum (not the usual 'other mum' who is mum to ds's lovely friend) said what her ds had said and she'd said back to him that she hoped he wasn't involved (he isn't) and that it will serve them right if ds loses his temper. But when that does happen it will be ds that gets the blame. The teachers never believe him when he describes the provocation. And the teacher said to me 'ds knows it was wrong to hit' OF COURSE HE KNOWS, he's not a fucking idiot, ds doesn't want to hit, but he can only hold it together for so long, grrrr angry

ouryve Wed 12-Mar-14 16:56:55

Polter & Claw sad

Do they not have a quiet room, then, Claw?

claw2 Wed 12-Mar-14 17:01:51

Ds is 10. I have just asked him to tell me why he was upset, now he has calmed down.

He is saying he was in lesson, and got upset because he couldnt find his book, he sat there crying for ages, so was taken to sit outside of the class by a TA and left there and told to come back in when he was ready.

While sitting outside another teacher walked past, saw how distressed he was and took him to reception and called down a different TA (kind of head TA) from his class. He then tried talking to ds etc, ds got even more distressed and that is when I was called.

claw2 Wed 12-Mar-14 17:07:21

Although ds has no idea of time, to him 2 minutes is 2 hours. I need to check in his planner, as he says from the start of science, which is a better indicator, to see what time science started.

ouryve Wed 12-Mar-14 17:09:09

Did anybody actually ask what had upset him or what would help him to feel better, other than sitting and waiting?

PolterGoose Wed 12-Mar-14 17:10:37

claw would something as simple as the TA asking ds regularly, but especially at the beginning of tasks, if he has everything and if he understands the task? But again, surely they can see he is getting anxious, or not on task, I know the expression of anxiety is different but our ds's would probably both benefit from someone to pick up the early and subtle signals and respond swiftly to remove the source of anxiety.

claw2 Wed 12-Mar-14 17:32:19

Checked his planner, science starts at 2, I was phoned at 3.

It is very difficult trying to get to bottom of things with ds, he talks a lot about irrelevant details and misses out the main points.

He went to science and was crying because he had forgotten his book. He was sent back to cloak room to get his book. He then broke down in tears on the way back because he thought he was in trouble for 'wasting time'. Went back into class, 'really started crying' and was taken out etc. So was taken out of class and left sitting outside and told to come back in when ready. Both the TA and science teacher went and spoke to him, asked if he was ok. He told them both he felt sick and couldn't breathe etc.

Then another teacher (who he doesn't know) walked past saw how distressed he was, took him to reception and called TA down.

moosemama Wed 12-Mar-14 17:44:56

Polter sad sounds so similar to what ds went through in primary and for that matter in his current school. There's the teacher and a TA who is supposed to be responsible for the 4 SEN pupils, yet seemingly they never see anything, not even the pretty big dangerous stuff, let alone under the radar needling.

Claw, that sounds so incredibly badly handled. Didn't anyone think to ask why he was upset in the first place ffs, let alone leaving him to stew alone in the corridor? Basically they just escalated the whole thing.

Polter, the support we are fighting for ds (that's clearly stated in his statement) is for him to have one person that he sees several times a day, every day and who is responsible for monitoring his emotional state/anxiety, dealing with any issues that arise before they become a huge issue and helping him organise himself. When we finally got it working at his primary this looked like 4 short 5-10 minute sessions a day with the same TA and that was enough. He knew if there was a problem he would get the chance to tell someone he trusted at a certain time and also that he wouldn't get into trouble for not having what he needed or for forgetting to hand things in etc - hence his anxiety was under control and if anything did happen that upset him, they were able to identify and deal with it swiftly to stop it escalating.

That's what I get so angry about. He doesn't need full time 1:1, just some scheduled short contact points during the day to manage his anxiety and organisational skills. It's not rocket science, but both schools have gone to extreme lengths to try and avoid having to do it - I assume because it's difficult to plan staff and or budget/wise.

The ridiculous thing is that we're arguing about a max 40 minutes a day contact, which is much less than having a TA in every class, which he doesn't need and isn't in his statement. Yet they keep telling us they are giving him more than his statement provision because there's a general TA (he doesn't need) in the room to help him if he needs it. Honestly I could scream with frustration sometimes - they just won't work with us or listen to reason and they're deliberately misinterpreting the statement, even though it's pretty tight and they are really pushing it by saying they're meeting the requirements (basically they're not). I just don't understand why they can't give him a few minutes, a few times a day if that's all he needs to be able to cope. Why on earth wouldn't they want to do that? There's absolutely no need for all this Emergency AR and constant arguing with us. His needs aren't all that great or expensive, so why can't they just bloody well do it then we can all just get on with our lives. angry

<<rant over, sorry>>

bochead Wed 12-Mar-14 17:51:25

If it helps anyone with a hypersensory profile & anxiety prone to boot kid, then my DS who fits this sort of description to a T has been doing REALLY well with online school this year.

We've been doing carefully selected social activities at a frequency and on a scale DS can cope with and gradually scaling them up over time. he left his last school a complete emotional wreck, and has had to adjust to relocating to the other side of the country this year, but his quality of life is still far better than it ever was when he was in school.

A word of warning though if you do go down this route though - the new LA hate it, and we are enduring yet another SS core assessment as a result of my refusal to shove him back in a brick school.

PolterGoose Wed 12-Mar-14 18:22:14

moose the checking in thing is exactly what my ds needs and OT has requested it too (it builds on the wonderful Alert Programme he did and which his TA attended). I've taken my eye off the ball and need to kick arse again. Ds had actually asked to speak to his TA many times and she was always 'too busy'. So when he asks he gets nothing so he really has given up now.

bochead I'm hopeful that secondary will be good for my ds, I maybe am a bit rose tinted glasses about it, but a lot of the 'structural' problems with primary just won't be an issue at secondary, and just having a set timetable will make a mahoosive difference for my ds. But, Internet school is my back up plan, I'm not prepared to chop and change schools, I was moved around on my mother's whims and it was really destructive for me so I won't do it. We try secondary, if it doesn't work then we HE/Internet school. That's my plan.

Jacksterbear Wed 12-Mar-14 18:31:48

moose and claw thanks. Sorry you're having to deal with such monumental stupidity.

The checking-in thing is in my DS' sensory diet schedule too, at the beginning and end of each session. I doubt very much it's actually being done although school say they are following the sensory diet.

moosemama Wed 12-Mar-14 19:18:15

Well, there's a turn up for the books. Inclusion Manager/Senco-with-a-fancy-title just called dh - at 7.00 pm! shock

The other child has been moved out of his teaching group, which means he won't be in any of ds's lessons anymore. TA is going with him (although they insisted this TA wasn't the other child's 1:1 when we told them we thought they were confused).

I feel really bad that the other child has been moved again, as none of this is his fault, but am hoping this has been a wake-up call for the school and they will start to support him better now.

So, ds has to get used to yet another TA change in his class, but they are saying his original TA from Term 1 and her jobshare counterpart, although not in his classes, are still his Mentors, although no details of a schedule of times for him to see them or how they are supposed to be mentoring him were forthcoming - but I guess that's the next battle.

There is still the issue of transport, which is really hard, as it means ds has to face the other boy and sit in a taxi with him for almost an hour before he even gets to school tomorrow. Dh will be speaking to the driver and escort before they leave in the morning and the LA have said no phones on in the taxi - they have to be in bags in the boot, so at least the inappropriate video viewing will have stopped. We are still waiting for the LA to get back to us on what, if anything, can be done about getting them onto separate transport runs.

Polter that's exactly what happened to ds in primary before I got every professional involved with him, plus the LA into a meeting and pointed out to them that the reason he wouldn't open up about anxieties or report bullying and other issues to them was because they had repeatedly failed to listen and/or sort out his problems and therefore, he had no trust in any of them and had given up.

I am the same about moving schools, for very similar reasons. HE/Internet school is my back-up plan too, but I really want him in school practising his social skills - but of course I only want him to do that if he's being properly supported and therefore in a position to learn and develop.

Ds's school are saying they are 'checking in' on him, but he needs a structured schedule of appointments or it just doesn't work. (Won't mention the fact that they often fail to check-in and they have no idea how often they do actually make contact with him, because it's all ad-hoc- not to mention rare. hmm)

claw2 Wed 12-Mar-14 19:50:25

Moose, he started crying in class and 'eventually' according to ds the TA asked why. He told her he was crying because he couldn't find his book. So he was sent crying to go and find his book.

He found it in the cloakroom and on the way back started crying more, because he thought he was in trouble for 'wasting time' and that he thought the teacher was 'angry' with him. He was then taken into the corridor and told to come back in when was ready.

While sitting outside, the TA came and asked was he ok, he said no and that he felt sick and couldn't breathe. So she left him there. Then the teacher came out and asked why he was crying he told him that he thought he was in trouble etc. The teacher left him there.

Ds said he was sitting outside sobbing, feeling sick and felt like he couldn't breathe. Then the other teacher came along and took him down to reception. Once in reception he started screaming and then I was called.

When I arrived in reception ds wasn't there, he had been taken somewhere else with TA.

First words out of TA's mouth were 'I have told him, I plan not to make a habit of calling you'. So I asked what was his plan then. He couldn't answer. I asked ds what he would find helpful. He said knowing what he was suppose to be doing and what books he needed and if the work was easier.

I then sent ds to get a hot chocolate and suggested to TA giving ds regular breaks, so he didn't get to that point. I suggested that he speak to ds's counsellor and OT for some strategies. I suggested that TA provide a written plan of what to do when ds is like that and send me a copy too, so ds is aware of what is expected of him.

claw2 Wed 12-Mar-14 20:08:40

Schools view is that if they phone me, then ds will expect this (I agree)

However they have no plan of what to do, instead!

youarewinning Wed 12-Mar-14 20:15:53

I have said to school not to ring me if DS has stomach pains as it's usually anxiety - proven by the fact I wade in and within 2 minutes DS tells me what is actually bothering him so I tell them to sort it and waft out again grin think it got embarrassing for them that it again change of teacher / not enough resources so he's worried he won't get his share/ change of routine etc.

All things they should forward plan and when he's in this state he's meant to have across to Elsa as per his IEP.

I don't think schools realise how much little things they do can make a major difference to our DCs.

My DS was so thrilled that as his ICT day had changed and co incided with his therapeutic story writing group his teacher and senco liaised so they did the lessons during separate periods. It was all I found out about his day on Tuesday - amazing what things actually matter your our DCs.
My friends often get relays of all the playground politics. grin

claw2 Wed 12-Mar-14 20:18:44

Oh and I was handed a bill for £200 while sat in reception! Bill for items not covered by LA.

Also told me how much the LA have paid, since ds has been there, which is handy to know.

moosemama Wed 12-Mar-14 20:22:23

I understand how it happened, what I can't understand is why no-one took the time to sit with him, explain that he wasn't in any trouble and try some strategies for calming him down, even if he didn't feel able to go back into class. I don't understand why they left him alone in that state and clearly the second teacher that took him to Reception felt the same.

I agree it isn't ideal for them to call you if that's going to lead to ds starting to expect it, but as you say, if they had strategies in place for what to do when his anxiety builds they shouldn't need to.

Have you given them a deadline for getting a plan of action to you?

Ds1 is understandably really nervous about going back tomorrow. It's the right thing to do though, as he was getting too comfortable at home and I'm sure it would have got harder and harder the longer it went on. I am already fretting about handing him over to the taxi in the morning and will be on pins all day worrying about him. He's talked my ears off this week and I was only saying to Mum today that I need a break and some rest, but it's a bit of a case of 'careful what you wish for', as tomorrow I'll both miss him and be worried sick about how he's getting on. It's a long day from 7.20am to 5.00pm.

moosemama Wed 12-Mar-14 20:25:17

shock at handing you a bill. We had a list of things, in addition to fees, that needed to be paid before the first day of the first term - things like insurance - but I checked with the admissions officer and she said the LA covers everything. The only things we pay for are his uniform/kit, locker key and school dinners.

youarewinning Wed 12-Mar-14 20:31:38

Do they expect you to pay the bill? Is this state school? I'm actually too shock to come up with anything useful to say about it!

bochead Wed 12-Mar-14 20:33:04

I hear loudly why you are saying you don't want to chop and change schools. That's why after nearly 2 terms online and settled/happy child I'm refusing point blank to disrupt DS again before secondary at a minimum (DS is year 5 and has already done 3 schools from reception to Year 4).

It's kinda crazy how the very children least able to adapt to change, seem most likely to have endure the most school changes isn't it?

In other news - we meet our new dentist tomorrow morning, that should be fun/^snark^. The need for a haircut is also getting out of hand - DS looks like a tanned windswept version of mrs bucket at the mo!

claw2 Wed 12-Mar-14 20:39:46

Sorry Moose, I am popping in and out and not reading my posts properly, trying to multi task! Reading back I am repeating myself blush

I think school are viewing the sitting outside of class as giving ds some down time, away from the situation. Which is good, as long as it works.

I asked TA for ASAP and he said he would aim for tomorrow.

Good luck for tomorrow, I will be thinking of you x

StarlightMcKingsThree Wed 12-Mar-14 20:39:48

You were given a bill? shock

claw2 Wed 12-Mar-14 20:43:17

Its an indi school 'balance due for items not covered by LA, food tech and insurance'

PolterGoose Wed 12-Mar-14 20:43:26

shock at bill from me too. Did you know they would charge you?

boc good luck at dentist

HugAndRoll Wed 12-Mar-14 20:44:48

I can't comprehend why you would be given a bill. I'm new to these threads so tell me if I'm missing something but shouldn't school (other than dinners, uniform and trips) be free? shock.

claw2 Wed 12-Mar-14 20:45:40

Yep I was handed a bill in reception. Tells me the amount the LA are paying and there is an outstanding balance of £200 for items not covered by LA

moosemama Wed 12-Mar-14 20:46:48

Claw, I think the idea of down-time is good, but would be concerned that sitting outside the class is used as a punishment in many schools and may have that association for your ds, hence him convincing himself he was in trouble. They need to come up with a quiet/safe space that he can use and let him know he can go there when things overwhelm him.

claw2 Wed 12-Mar-14 20:46:52

No I was never told I would have to pay for food tech or insurance.

claw2 Wed 12-Mar-14 20:49:42

Good key word there Moose safe place, a place in which ds feels safe. He obviously wasnt feeling safe and even commented to his TA that he doesnt 'trust' him. I will see what they come up with.

bochead Wed 12-Mar-14 20:56:18

food tech bill is for ingredients - most state school charge this too sad.

I'd query the insurance though as that's an expense I'd deffo expect to be covered by the LA, especially in todays ambulance chaser climate.

i'd want an explanation of "items not covered by LA" too, as sainsbury's basics are the poshest custard creams ever served in our house lol!

I do think it's not cricket to present you with a bill that big without reasonable notice.

moosemama Wed 12-Mar-14 20:59:57

We provide all our own ingredients for food-tech.

Insurance is definitely covered by our LA as was some sort of deposit, that I've totally forgotten what was for - might have been for text books.

SummerRain Wed 12-Mar-14 21:04:36

We pay insurance over here but it's 3/4 euros a year per child, 7 euros for 24 hour coverage. How on earth can insurance and a few bits of food cost £200? shock

claw2 Wed 12-Mar-14 21:19:09

I think it may be a yearly bill. I will query it.

Hearing how they dealt with ds today, makes me think twice about anxiety medication.

They haven't even provided him with a list of what he needs for each lesson or what lesson is coming next. That is pretty basic stuff.

PolterGoose Wed 12-Mar-14 21:22:02

That is indeed basic stuff claw, I've noticed though that the NT kids do seem to just know stuff without being told, I have to teach ds every little thing, but they just seem to somehow piece stuff together and work stuff out.

youarewinning Wed 12-Mar-14 21:37:13

I have started a thread in SN children. I'm hoping some of you will be able to help me.

Claw - I would imagine that is yearly. Although if he's been there since September? You'd think they'd have said something by now! I like the safe space idea. DS classroom has one within it. Basically it's just an area by the books that a student can go too (any student but set up for my DS) for time out and gather their thoughts. It's great because it's a visual clue for ta/ teacher that that student needs support. In there is also a daily timetable and cards with reminders of what's needed for each lesson. Again available for all children but set up as a way of prompting my DS.
It's just these smile things that a) don't single him out and be) give him some thinking space. I'm only just beginning to relax now as I've waited for some negatives this year (ok there's some but nothing dramatic!) but all this seems to just help DS as he knows he can have his "moments" but that there's a way for him to deal with them.

claw2 Wed 12-Mar-14 21:37:58

Looking on the funny side, it was funny to hear ds telling his TA what he needed. He will make a good Mner!

It is all just so simple Polter, ds can explain quite clearly what is bothering him and what would make him feel better most of the time, if only someone took time to ask.

It is such a simple conversation too.

PolterGoose Wed 12-Mar-14 21:42:17

Same here claw, a little bit of effort with our boys could have a huge impact. Dealing with the aftermath, whether it's your ds's uncontrollable anguish or mine's uncontrollable anger, takes so much more effort.

youare I've just been on your thread, do say if it doesn't make sense!

Livesforbedtime Wed 12-Mar-14 21:46:40

Can I join in for a school rant? Ds's teacher is just not getting it! He's taking ds's breaktime away AGAIN for tomorrow.. Because ds didn't raise his hand. Absolutely nothing in the communication book about it.. So obviously ds goes into a full blown meltdown tonight at bedtime cos he didn't want to go to school tomorrow.

It genuinely doesn't seem to matter how many times
I say don't postpone punishments, or I shove it in his face show the OT report that specifically says don't touch his breaktimes as he needs the break for
Class.. He does it again.. And I swear if he says again
I know what I'm doing' I may choke him..

Roll on bloody July!

PolterGoose Wed 12-Mar-14 21:50:11

How old's your ds Lives? Why are so many teachers so oblivious? They just don't get it at all.

youarewinning Wed 12-Mar-14 21:50:35

It made sense polter! Thanks. I think it will really help me distinguish what actually gives DS any type of emotional response or feeling. Then we can work on keeping the engine ticking over! I think it will help me to get him to see that feeling fine does mean he's happy iyswim? I'm worried (maybe unnecessarily) as he gets older he'll start seeking sensory experiences just to fell something and this could be detrimental iyswim?

PolterGoose Wed 12-Mar-14 21:53:09

I actually think it helps taking away words like happy and sad which are too abstract almost.

youarewinning Wed 12-Mar-14 21:54:42

I'm not sure I'm making sense! I guess what I'm saying is that getting DS to understand the engine ticking over is a feeling of happiness and that the overdrive bit (that he seems to think he needs for an emotional response) is ok in small doses but great as a long term thing to seek out!

claw2 Wed 12-Mar-14 21:55:43

Polter, he was fine instantly he saw me, he ran over, sat on my chair and clung to my neck and didn't let go, as if to ensure I couldn't leave without him. Its bloody heart breaking.

On one hand I don't want to send him, until there is a plan in place and on the other I know I will make a rod for my own back if I don't.

Sorry youarewinning I will pop over and mark my place, although I might not be able to comment much tonight, anticipating a bad night with ds.

youarewinning Wed 12-Mar-14 21:57:32

Ah yes! I see what you mean! I do think as well as they are really the only 2 'feelings' he has he is using them to describe a range of good or bad feelings rather than actually pinpointing the exact feeling he has. Eg happy could be excited, relaxed etc. and we know that excited and relaxed exhibit very differently in out children! (And when he's using happy to describe both it's no wonder I'm as confused as he is!)

HugAndRoll Wed 12-Mar-14 22:17:15

I really feel for your boys, it must be horrible to see them like that.

I checked ds1's communication book again today and there is still nothing from his teacher in there. I've written in it about 6/7 times (was told it was NOT for everyday) and there hasn't been any acknowledgment it's even been read. In one comment I actually wrote "can you please acknowledge you have read this"... Wwyd?

Livesforbedtime Wed 12-Mar-14 22:21:14

Ds is coming up 8.. It's made so much worse by the fact that his teacher last year was nothing short of amazing.

His teacher this year is one of those 'I've been teaching badly for years and this works types!

The stupid thing is, he's a bloody good teacher - he just has no knowledge (or desire to learn) about special needs. Ds has gone from top of his class academically and stable ish to self harming again, meltdowns and has managed to go down 2 levels in his SATs allegedly! And all this is with twice as many 1:1 hours as he had last year hmm

That said this is the teacher that originally took his 1:1 support away with a 'he doesn't need it as much as other children in my class do' and didn't give it back until I had a meeting with the head, the senco and last years teacher and he was overridden! angry I'm just so tired of fighting this stuff? It's not rocket science!

Livesforbedtime Wed 12-Mar-14 22:22:54

hug could you actually ask the teacher? Who suggested the book was put in place?

claw2 Wed 12-Mar-14 22:29:55

hug I used to hand ds's book to the teacher in the morning and tell her I had written in it. In new school communication is done by email.

Ds has settled for a bit now. He is acting a bit unusual, he was sobbing saying 'is it all a dream' over and over and 'nothing feels real' and that he is 'scared'. God this is so hard.

HugAndRoll Wed 12-Mar-14 22:56:48

The teacher isn't massively approachable. The communication book was so I didn't have to monopolise time and was suggested by ds1's specialist health visitor in a meeting we had with his CT and Senco. Maybe I'm too presumptuous that she would read it hmm.

claw2 Thu 13-Mar-14 07:44:05

Terrible, terrible night with ds, he didn't sleep until 2am and was acting very strange as if he was drunk or hallucinating or something. He was incoherent at times or making humming sounds, followed by sobbing and keep repeating 'is it a dream' and 'nothing feels real, im scared'. Then telling me he misses 'buttercup' which is a butterfly who used to be his friend. (I have never heard of 'buttercup' before)

He wouldn't answer me if I spoke to him or answered with noises.

I have left him sleeping for now and cancelled his taxi.

PolterGoose Thu 13-Mar-14 07:53:58

Oh claw sad that sounds scary. Is there anyone you can speak to for professional advice today?

claw2 Thu 13-Mar-14 08:00:29

Polter, it was horrible, at one point I had to get my son to sit with him, as I had tears coming and couldn't get upset in front of him. Even my son thought that ds had taken drugs or something.

I phoned CAMHS yesterday and they didn't return my call, so I will phone them again today. If ds wakes up like that this morning, I will take him to A&E.

AliceinWinterWonderland Thu 13-Mar-14 09:24:56

What little bubble of normalcy I had, it has now been shattered. School SENCO at DS2's school has caught me this morning to tell me she got the testing/assessment done on DS2 and she agrees that there are problems. She is going to be pushing for referrals to paed, hearing testing, and SALT for starters. The report should be coming home to me today, and then she will be meeting with me in a week or so to go over specifics.

I'm going to have to put the words "file room" on my bedroom door at this rate.

Any point in even mentioning this to STBXH? I can't imagine it'll matter to him. If anything, it will confirm to him that the boys are too much "hard work." hmm

AliceinWinterWonderland Thu 13-Mar-14 09:30:12

claw so sorry - just read your last posts. How scary. Is he more himself this morning?

ouryve Thu 13-Mar-14 09:36:08

I hope he's a bit calmer, today, claw. Anxiety does horrible things, in the middle of the night.

I wouldn't go out of your way to contact him about it, Alice, but next time you have to speak to him, do mention it (fully ready for the tumbleweed), or else he'll probably start accusing you of keeping things from him.

claw2 Thu 13-Mar-14 09:41:42

I woke him at 9am, he still seems very confused. He feels quite shaky and is complaining of bad pains in his arms and legs 'like someone has been kicking him'. He is having moments of clarity, then not making sense, lots of mumbling.

CAMHS should be phoning me back after 10

AliceinWinterWonderland Thu 13-Mar-14 09:49:20

Claw Has he been taking any new meds? The only reason I ask is that DD had a really scary reaction to prednisolone when she was about 9-10, after taking it for a few days. If I hadn't realised that was what was causing it, I would have instantly thought "psych problems." It scared me and terrified her.

NoHaudinMaWheest Thu 13-Mar-14 09:51:20

Claw that must have been really terrifying. Even if he is better this morning it is definitely a medical emergency.

Alice I feel for you. At the moment I too am going through the 'here we go again' feeling with all dd's issues. At least the school seem reasonably proactive.

AliceinWinterWonderland Thu 13-Mar-14 09:51:34

ouryve true, hadn't thought of that. Either way I suppose I'll get accusations - he'll most likely accuse me of trying to make him feel guilty. Guarantee he claim I'm trying to pile the pressure on him, as that's his usual response to stuff like this. Not sure how it piles pressure on him to grunt in response and then sit back while I deal with everything myself, but there you go. hmm

AliceinWinterWonderland Thu 13-Mar-14 09:53:03

NoHaudin Yes, DS2's school is the same primary school that got things sorted for DS1 when he was in MS, so they are brilliant about that generally. Thank goodness. I am not sure I have the energy for an all-out LA battle at the moment.

ouryve Thu 13-Mar-14 09:59:03

if oyu hit a brick wall with CAMHS, do take him to A&E, claw.

Alice - must take everything you have not to be thoroughly sarcastic with him. If you don't tell him and he whinges about you not telling him, then he has a point, though, while if you do and he complains about feeling put upon, then that's his problem, not yours because you've behaved impeccably.

claw2 Thu 13-Mar-14 10:00:44

No meds. He is a bit better this morning, but still acting very strange.

This is what he was like last year, after he had an emergency mental health assessment in A&E. He was having moments of really odd behaviour, hiding in wardrobes, mumbling etc.

CAMHS should be phoning in a minute. See what they say.

ouryve Thu 13-Mar-14 10:02:24

In fact, Alice, I've found the perfect expression for you when he starts complaining.

AliceinWinterWonderland Thu 13-Mar-14 10:04:18

ouryve true - I will take the high road and tell him when next he deigns to communicate. I will NOT seek him out. I draw the line at that. But I will mention it so that I cannot be reasonably accused of withholding info from him. And, as always, will document it all.

claw fingers crossed they can see him immediately, so that he can get assessed and get some support.

HugAndRoll Thu 13-Mar-14 10:05:04

claw how is ds doing? I hope camhs have called you back, if not I agree you need to take him to A&E. Make sure you also take care of yourself ((hug)).

Alice I also think you should tell stbxh but just matter of facts and then he's the one who will end up looking like a bellend again

There is a superhero day at ds1's school tomorrow. He's adamant he's not going to school because of it and definitely doesn't want to dress up. Told his CT who said he's been saying it all week (so why wasn't I made aware?!).

AliceinWinterWonderland Thu 13-Mar-14 10:05:23

ouryve bwaahaaahahaahahahaa I love it! I shall stand in front of the mirror and practice until it's perfected. grin

HugAndRoll Thu 13-Mar-14 10:06:37

Don't you mean purrrrfected (roll the "r") grin.

claw2 Thu 13-Mar-14 10:09:21

I phoned CAMHS at 9, person in charge of his case was with someone, i was told her appointment finishes at 10.

I asked to speak to duty worker and was told there was no one there yet. Either ds's worker or duty worker would call me back, whoever was free first.

I will give it 5 mins, then call back.

PolterGoose Thu 13-Mar-14 10:14:53

claw good luck today flowers

Alice nothing to add to ouryve's advice, good luck you too flowers

Ds's teacher emailed back, apparently he did notice that the other children were 'amused by ds's anger' so fuck knows why he didn't do anything about it, he said nothing about dealing with the other children angry ds said this morning that the SATs writing paper he was pulled out to do was 'impossible' as he had to write about 'the best things in life are free' and he couldn't think what other people might think are the best things, I suggested he could have written what he thought but apparently this wasn't 'right'. I really hope we get our SALT assessment soon so his language issues can be formally recognised, because no one listens to me, I'm just a parent hmm

claw2 Thu 13-Mar-14 10:16:33

Thanks and apologises for grabbing all the advice and not contributing to anyone elses problems x

ouryve Thu 13-Mar-14 10:18:52

Claw, you have plenty on your plate, at the moment x

AliceinWinterWonderland Thu 13-Mar-14 10:24:35

Don't you mean purrrrfected (roll the "r") grin Love it.

Polter I cannot believe that. That's absolutely inexcuseable! "amused by ds's anger" ??!?! I thought they were supposed to be supporting him, not condoning bullying behaviour.

claw Don't worry about the rest of us for a minute! Your DS has your complete attention now, and rightly so. Best of luck today.

HugAndRoll My DS1 hates doing any dressing up stuff at school - he generally refuses to participate and they're fine with that. DS2 loves it.

ouryve Thu 13-Mar-14 10:27:18

Polter, I think that, unless the other kids were goading him, the most appropriate response would be to tall them (politely) to wind their necks in and stop being ghoulish and get on with their work. If that wasn't even done, then there's no wonder the bullying goes unchecked.

And in those circumstances, DS1 would have found a paper that he should have been capable of impossible. Your DS wouldn't have been thinking at all clearly and so the rigidity would have set in. I bet that, handled properly with warning and prior agreement about when he should do it, he would have been less concerned about his own views being the "wrong" views.

PolterGoose Thu 13-Mar-14 10:36:10

Absolutely ouryve and Alice, and the teacher seems to be placing all the responsibility on ds to tell him or the LSA but ds's previous experience of not being believed and nothing happening means he can't see the point. Thankfully it's spring and there's lots of wildlife to distract and ameliorate, it helps a lot.

claw just focus on your ds, that's what's important smile

StarlightMcKingsThree Thu 13-Mar-14 10:50:34

Claw. No advice I'm afraid but am listening in and hoping your ds gets some quality attention soon. It sounds very scary.

Polter

'he couldn't think what other people might think are the best things'

Oh Polter, that brought a tear to my eye. He obviously suspects he'll get the answer wrong as his brain doesn't work the way the markers will find acceptable. It's also brilliant that he is mindful of that though, but poor little mite.

NoHaudinMaWheest Thu 13-Mar-14 11:07:52

angry at CT polter what on earth was he thinking to just let the other children's reactions pass for any child much less a vulnerable one.

Ds would have found that question impossible too. But your ds must have quite a lot of insight to know his best things are so different from others.
And as ouryve says with preparation he could have done a brilliant piece of writing. After all frog spawn and stag beetles are free!

claw2 Thu 13-Mar-14 11:11:33

I phoned CAMHS back, was told she is still with someone, asked to speak to duty worker and was told the person who usually deals with ds will phone me back as she has his case history.

Ds is behaving a bit more like himself now, he is lining up pokemon cards in his room. Something he does when stressed, so he is kinda trying to self regulate i guess. He is still staring straight through me, when i ask him a question and not replying or his replies are a bit muddled. He is doing things such as touching everything, windows, the dogs, doors, laying on the floor etc

I think he is trying to self regulate, if that makes sense. Oh i don't know, feeling a little confused by it all myself.

PolterGoose Thu 13-Mar-14 11:22:32

NoHaudin and Star he is quite insightful in some ways, but like so many things it just makes him appear more able and more coping than he is. Like so many of our children he doesn't fit what people (especially teachers) think a child with AS is like, so there are things he does that they think show he's 'not so bad after all' and things he doesn't do which make them think he's not very autistic so he's again 'not so bad after all' IYSWIM? for example, his apparent confidence, creativity and imagination really screw with their expectations.

claw still thinking of you and sending HONKs

StarlightMcKingsThree Thu 13-Mar-14 11:30:30

Yep. I'm sick of people telling me ds can't generalise.

I ask them what they mean and they give me a generic description, then I inform them I know what IT means, just not why they are claiming it is true of ds.

Their response is always 'because he has ASD', but they can never think of a specific example that applies to him. On the rare occasion they have come up with something weak I can easily show that it was the language that got in the way, not the inability to generalise.

homework Thu 13-Mar-14 11:48:30

Only finished load of nights , so have just now caught up .
Claw get in touch with your gp and get a home visit , so that it is documented in his records about the state he's in at the present moment . This hopefully you can use to support your claim about his mental anxiety . Although school sound like there fully aware of it , just not supporting him appropriately .
Moose hope things go well for your son return to school today , lea and school , both need to solve there problems without including the children . At least transport boy no longer in his class , the phones in boot is good as long as carer has sense and ability to make sure this happens.
Polter , your poor child , don't know what to advise as we went though similar at high school , with the sly ness that never get pulled up on , we moved school in the end.
All I can do is offer you tea / coffee/ cake and listen , like everyone else .
It's hard cause even when you come up with a reasonable solution school , don't want to know cause it's come from the parents and not themselves or the professionals, that they trust .

SummerRain Thu 13-Mar-14 11:49:44

Claw, hope you got through to someone. Sounds worrying as hell flowers

Just back from the school, Ds1 made his first confession and we were allowed to take him home after the ceremony... The kids are off until Tuesday now (Paddy's day on Monday so they have a four day weekend)... If I can just get through the hell that is today I can hide from the world again for a few days. Still have rugby training, a meeting at the priest's house about the communion and the pta agm to go today though.

AliceinWinterWonderland Thu 13-Mar-14 12:04:00

Just got back from nice long counselling session. Lovely counsellor. It felt so good to talk through everything that is going on. Definitely going to be of help to me.

Although am emotionally wrung out a bit, and I think I will put off painting the entryway until tomorrow morning.

claw2 Thu 13-Mar-14 12:05:26

He seems to have snapped out of it now. He is sitting at the table playing lego and bubble making with me. Chatting away as if nothing happened.

StarlightMcKingsThree Thu 13-Mar-14 12:12:10
claw2 Thu 13-Mar-14 12:23:45

Wow Star that sounds exactly like ds's behaviour and rings so many bells with previous assessments. Nothing has been explored with ds, since his A&E visit over a year ago now.

He was seen in A&E, due to interfering last school (saying dont know what mum is talking about etc) and SW and the whole mess, i don't think CAMHS took it too seriously. They saw ds about once, then signed him off from school due to all the pressure on them from SW, school, LA, me etc to make a decision.

claw2 Thu 13-Mar-14 12:36:30

Last night, he was asking me 'am i insane, nothing feels right' then sobbing hysterically and telling me he was scared.

At one point, he was tapping himself in the face with his stress ball repeatedly, while kind of like in a trance, robotic, just staring. When i stopped him and asked why he was doing it he said 'wake up'.

This morning he was wandering around touching everything, as if to see if they were real.

He is now back to normal again.

zzzzz Thu 13-Mar-14 12:37:13

claw a huge honk from me. Ds1 does the touching when stressed. Dd3 couldn't recognise me when she was very ill. So frightening, but it will pass and things will get better. You are being so brave. What a lucky boy to have you at his back. If you can manage try to video to show the Drs. Scribble some notes on what has happened and what is happening. It will help you remember but also help you feel a bit more in control.

polt. Time to disengage from that school. Get a big chart of how many days to go and start crossing off some days. Personally I'd dereg him at Easter and have a bugtastic summer April to Sept, but I am bad. grin

As for the endless amateur psychologist proving and disproving how autistic our children are. angry it is SO FUCKING ANNOYING hours of valuable time spent in fruitless pondering. I have to admit I am gutted it still goes on post dx. It's one of the things I was hoping to avoid. sad

StarlightMcKingsThree Thu 13-Mar-14 12:37:48

In that case it would probably be worth asking for an assessment for it.

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homework Thu 13-Mar-14 12:42:49

Claw glad he's feeling better , does he remember any of it , hopefully not . Your poor child , how can they not see the anguish that our kids are going though.
Read in news recently about the poor state of children's mental health services , really do agree with this , cutbacks are just making everything worse , as people don't believe children can suffer from this type of problem.
Shame that these people don't , have to fight to get the poor service that available for our children , even when you finally get an appointment , there quick to tell you that there services is very limited and can't sort out complex problems , maybe if they had been seen when problem first presented they wouldn't be so complex , also don't think they have training or ability to deal with complex problems.
Claw have you any idea what cause him to go into such a cartonic state . Are camhs still going to reassess him ? They can't just ignore what's happening with your poor child . That would be a failure of duty to care surely .

claw2 Thu 13-Mar-14 12:46:27

Zzz that is exactly what my older ds said to me this morning, we should have videoed him. It was all so strange and worrying at the time, you just don't think. I will bear it in mind. I have been scribbling some notes down and reading Star's link is so very similar to what happened, its helping me to remember last night. Ds isn't usually a toucher, he is the opposite, he avoids touching anything.

Thanks Star will have a read.

PolterGoose Thu 13-Mar-14 12:55:54

zzzzz he doesn't want to not go, I suggested to him yesterday that he has a day or more off a week but he said he looks forward to something every day, he wants to go to school and I have to do what I can to support that, and I work, I can't not work for many reasons. He actually said to me when I've mentioned HE: "But you enjoy your work and I don't want you to not do something you like doing". He's a real sweetie behind the fury. We will plod on, I need to get my arse in gear with transition stuff, we can arrange lots of visits to secondary and we've got a bonus week when his year go off on residential when I'm going to request he has a week off and we will do the natural history museum and whatever else we wouldn't do in school holidays. It's not long to go now.

claw2 Thu 13-Mar-14 12:58:50

Home, now he is saying he felt confused and scared and didn't know what was happening to him. It felt like a dream, a very long dream.

It has been building up for about 2 weeks now i think. Getting very distressed in school, breaking down crying several times a day. Lots of physical symptoms in school of anxiety, feeling sick, cant breathe etc. I had to go and get him about 2 weeks ago. Then last 2 days school have phoned me to come and get him. 1st day after 15 minutes in school, so he calmed down pretty quickly once home. Yesterday, i got a call at 3pm as ds had become hysterical and couldn't wait until 3.30.

Im still waiting for CAMHS to phone back. Waited in all day yesterday for her to call too.

PolterGoose Thu 13-Mar-14 13:01:42

I hope they ring soon claw

ouryve Thu 13-Mar-14 13:03:49

Most of DS1's class were out on residential when I took him out for a few days. it's a good time for a re-boot.

claw2 Thu 13-Mar-14 13:04:06

Thanks Star the second link has helped me to remember he was asking 'is time real'. At the time, what he was saying just seemed like ramblings to me, but when you set it against a criteria, it makes more sense if you know what i mean.

I scribbling down notes now. Ds's older brother is keeping him amused, so i can get on.

StarlightMcKingsThree Thu 13-Mar-14 13:05:59

FFS! Phone again. Ask what time you should expect a call back and inform them that you'll give just 5 mins after that time and call again.

If they say they don't know then say you will phone back in 30 minutes then.

Record all calls, plus all promises in a log and send it to them at the end of the day asking why they didn't fulfil their promises to a family with a very distressed child.

homework Thu 13-Mar-14 13:18:51

I think that it is ridiculous that she didn't at least call you back yesterday , you may have then been able to avoid this episode that your poor child just gone though , also for your older child to have witnessed.
Is there a head person that you can speak to , that by neglecting to call you back yesterday your child has now experience , a full on breakdown.

Hope she at least has the decency to call you back , as you rang how many times today and left messages , no doubt explaining what a state your poor son been in , due to his issues with school .

I also speak to school about what has happened today , why teacher thinks it's a good idea to sit him outside the classroom rather than give him his book or get another couple of children to share for that lesson . Sure there's two kids in class who can be relied upon to work together without distraction.

Why couldn't a little common sense provile with this teacher , who already know that your child suffers from anxiety . Why make there condition worse , when there can be easy solution if he had looked for it.

zzzzz Thu 13-Mar-14 13:21:33

polt only you can judge where he needs to be. It's like a seesaw, suddenly the cons overwhelm the pros and you know. He sounds such a lovely boy. It's special this "seeing the child through the eyes of the Mother", I'm so glad I MNSN.

PolterGoose Thu 13-Mar-14 13:27:46

zzzzz he is a lovely boy, thank you flowers I will know when/if it's time to withdraw him. I agree, I've learned so much on here and have gained far more than I've ever given.

claw2 Thu 13-Mar-14 13:29:58

I have phoned several times now Star, now she is 'at lunch'.

Interesting Home asked what kicked off this episode, ds told me a few minutes ago, that it started in school, when they left him sitting outside the classroom distressed, he thought he was dreaming and didn't feel right. Which would explain why he started screaming and became hysterical.

StarlightMcKingsThree Thu 13-Mar-14 13:32:55

Children and Families Bill just became law!

PolterGoose Thu 13-Mar-14 13:39:51

claw could this be related to his eating issues? Low blood sugar and nutritional deficiencies can cause this type of behaviour.

Bilberry Thu 13-Mar-14 13:47:16

Will catch up later but I hope moose and claw have had a better couple of days.

I've just put a placing request in (keeping the council SEN team busy) so feeling relieved. Deadline is Saturday so it went by recorded delivery and email. I hope to put it all aside for a few days before I start worrying about the outcome.

PolterGoose Thu 13-Mar-14 13:48:15

BTW, I'm not suggesting the anxiety isn't real, more that his lack of food/nutrition will exacerbate his anxiety and create those scary and unpleasant feelings.

claw2 Thu 13-Mar-14 14:25:00

Possibly Polter, although GP thinks that blood test results and his anxiety are not related. Blood test will be repeated at the end of the month. So more waiting and seeing.

She phoned me backed. Explained what had happened. She said she didn't have any answers as to what caused it. However sounds like high anxiety, feeling overwhelmed causes ds to cut off and disassociated himself from his feelings.

Her advice

1. He needs a plan of what school should do when he becomes distressed. School should use my 'expertise' as to what does and doesn't work.

2. He should not be left alone when distressed.

3. He needs a heightened level of support in school

4. identify triggers, keep diary etc

I asked what should i do if he has another 'episode'. Her response you are used to dealing with it, you have been doing so for years. You are an 'expert' in doing so. Carry on doing what you do.

Review next month.

Fucking great, i have sat waiting for days for something i could have done myself.

She really, really pissed me off with her 'it must have been very scary for you', trying to lead to 'so how are you feeling' Oh do FUCK OFF patronising cow!

PolterGoose Thu 13-Mar-14 14:39:14

claw angry but at same time not surprised. The 'professionals' have no idea. We (the MNSN masseeeev) know more than most people getting paid to do this stuff.

bochead Thu 13-Mar-14 14:43:02

Claw2 - can you get to the Maudsley? The have an autism unit that deals with children. Kings College hospital has an A& E dept opposite.

Star - does this mean we have personal budgets for education ? If so yeeeehaw! Or does it mean an explosion of tea and biscuit jamborees for the carrots while the kids are left to rot a few years? Lots of charidees will be rubbing their hands with glee at the thought of getting their hands on gubberment cash in return for all that rubber stamping they did at the rubber stamping stage.

StarlightMcKingsThree Thu 13-Mar-14 14:44:44

Claw, you need to write to her and paraphrase what she has said as 'I'm not interested, I'm not going to investigate etc.'

You also need to point out that you might have been doing this for years BUT IT HASN'T WORKED!!!

You then have to point out that having gathered your YEARS of experience your conclusion is that your ds has reached crisis point, it is an emergency situation and you EXPECT her to see him as a matter of urgency for a proper assessment.

homework Thu 13-Mar-14 14:45:40

Claw is she going to speak with school then to get this implemented , as there not going to do this on your say so .
Interesting that she thinks you have expertise in one comment , then being patronising in another , with the that must have been so freighting for you.
Surely she could have gotten him seen earlier than a month considering what just happened .

StarlightMcKingsThree Thu 13-Mar-14 14:46:38

It's complicated Bochead. It could mean that you have personal budgets, but too much of that arrangement is down to LA discretion for my liking. They are still allowed to consider the public purse and there are very convoluted ways of pretending you are doing that, and Headteachers have overall control of provision within their schools.

claw2 Thu 13-Mar-14 14:51:09

Apparently CAMHS are only interested if ds is 'not safe'. All the while i can keep him 'safe', then i am to carry on doing what i do as i am the 'expert'.

Ds doesn't need a 'label', he has one ASD, so all difficulties are to down to ASD.

So unless ds is suicidal or detached from reality 24/7, CAMHS are just not interested and any distressed should be sorted with school.

Then they have to cheek to say 'aww must have been scary for you' no more scary than you just leaving me to be the bloody expert in mental health.

'how are you feeling', angry with you would have been an honest reply. I didn't bloody phone for me, i phoned for ds and what does it matter how i am feeling, you are not going to do anything anyhow.

Grr rant over! Im putting the kettle on, then i will get on with writing ds's 'plan'

StarlightMcKingsThree Thu 13-Mar-14 14:54:05

So who do you take ds to then if not CAHMS?

Where would I take my dd right now, if something similar happened to her?

homework Thu 13-Mar-14 14:56:30

Sorry but this sounds like a case of let's wait till kids does something serious that gets in serious trouble with police , then everyone points and says knew that kid wasn't right , but never did anything to help poor said child till came to this.
How many stories do we read in paper like this . Would it not be cheaper to offer support now , than pay for prison later in there lives .
How many young people lives could have been chanced if the so call professionals had actually done there jobs in first place rather than passing around in the poor system.
This is me just having a general rant .

claw2 Thu 13-Mar-14 15:01:45

Oh Star, i can take ds there...in April 'for a review'. But its not an emergency unless ds 'isn't safe'. 'isn't safe' equals suicidal.

As far as she is concerned ds is 'safe with me, i know how to deal with it and calm him down'

She feels leaving ds alone when he was distressed triggered this episode and that I need to make a plan with school. I am the expert in ds and what does and doesn't work when he is distressed and I need to advice school.

zzzzz Thu 13-Mar-14 15:04:30

claw I have has variations on that "you soooo good at it.....how ARE you?" Crap for fucking years. angry

I have to do a school run, but I am honking for you and thinking hard.

claw2 Thu 13-Mar-14 15:08:48

I agree Homework, CAMHS have assessed ds numerous times and each time concluded its educational, sort it out amongst yourselves. But then education just don't have the expertise to sort it out, they need guidance. CAMHS as saying that guidance should come from me, yeah right, try getting that written into a statement.

StarlightMcKingsThree Thu 13-Mar-14 15:09:47

I would call them then follow in writing that you want a second opinion. Your child is deteriorating due their negligence.

StarlightMcKingsThree Thu 13-Mar-14 15:11:41
claw2 Thu 13-Mar-14 15:20:16

Apparently the appointment in April is with Dr so and so. She is the senior person who decides whether a child is fit enough to be discharged or not.

To be honest if they were to assess him now at this precise moment, they would conclude nothing wrong with him, but anxiety. He is totally fine now.

Maybe i do need for these 'episodes' to happen more than once.

bochead Thu 13-Mar-14 15:29:57

A&E means you get seen by a shrink with 24 hours. hence my suggestion of kings college to get a referral over the road to the maudsley children's unit. A day trip to Dulwich picture gallery perhaps?

Otherwise you can be lost in a sea of support workers and nonsense appointments forever as cahms seems to have no accountability mechanisms whatsoever - even when a teen suicide occurs which disgusts me beyond words. UK cahms services need sorting as a matter of national urgency imho.

Workers in the youth justice system do have to account for their actions.

ouryve Thu 13-Mar-14 16:01:42

Interestingly, DS1's TA and I haven't seen or heard him tic once, since he got his good news on Monday. They were coming back to back on Sunday. Knowing that there's an end in sight seems to have had a positive effect on his general mood.

PolterGoose Thu 13-Mar-14 16:06:56

That's good ouryve smile when does he start his new school?

Ds has had a 'good enough' day today, phew.

claw2 Thu 13-Mar-14 16:13:45

Boc A&E means CAMHS duty shrink assess him in A&E!

CAMHS have already given me advice, if i rock up in A&E with ds being as bright as button, as he is now and previous school's opinion of me being the 'over anxious' one. Wont look good.

AliceinWinterWonderland Thu 13-Mar-14 16:14:58

Yikes. Just read through the report sent home by the Senco. There's a long list of recommendations. Good that they're getting on this quickly and implementing things right away, but I'm just tired looking at it. Here we go again.....

The big difference between DS2 and DS1 is that despite DS1's disabilities, he has an incredibly good memory, and very good reading and math skills. DS2 doesn't - he seems to have a problem with his working visual memory which means reading and math are a complete struggle. We go over things regularly and still it's like it's "new info" to him a day or two later.

ouryve Thu 13-Mar-14 16:29:21

Whenever his statement's sorted out, Polter! LA had already conceded to tribunal that parts 2 and 3 did need amending and they'll consult new school, as they have their own procedures for delivering certain things. The precise flavour of the learning support he gets is going to be different from what he's needed in MS, for example. He'll no longer need a TA either making sure that he's understood a whole class instruction or making sure that he's safe and engaged when he won't go in the classroom with 20 odd other kids, as he'll be in a class 1/4 of the size. The "changes in curriculum presentation" are pretty much a big part of this school's bread and butter and all the social and physical stuff he needs would be delivered under their "outdoor education" program. (They don't do PE in the traditional sense!)

claw - next time your DS has one of these episodes, don't hesitate to take him to A&E, so long as he's safe to transport. At least, if your see your own psych, he will know this has happened before.

Galena Thu 13-Mar-14 16:30:09

Sorry I can't offer advice... I've been reading and moose, polter, alice and claw all seem to be having shitty times, but I have no advice. lots of honks though.

We had paed appt yesterday and DD is now officially overweight. sad I think that, since having the op she has started using less energy for everyday life, and her eating has remained the same (not OTT for a 4yr old though in my opinion). We need to get a handle on this though as extra weight won't help her mobility. I've buggered up DD now as well as myself sad