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whats going on with my ds?? VERY Long post but please read and comment if you have the time, desperate for comments/advice/similar stories

34 replies

worriedaboutmyson · 14/01/2011 21:00

ok, before I start Im sorry this is such a long post, Ive lurked on these boards for years now but never posted much as its so difficult and lengthy to explain whats been going on. Its got to desperation point now, I really need support/help/advice so hence my mammoth post.Im going to post this on the SN board as well and Ive name changed to protect my id somewhat, but my post could easily make myself/child indetifiable so if you think you know us please dont aknowledge that on here-feel free to pm me instead.
somethings may be irrelevant but ive tried to remember and include as much info as poss to give you a clearer picture.
right, here goes...

Horrible pregnancy(spd etc)traumatic long labour with long 2nd stage. born healthy, slightly jaundiced,extremely sleepy, refused to latch to feed, persisted but gave formula after 24 as no success.
Always wanted to be held, had to swaddle to sleep birth-approx 18months. never crawled, army shuffled, walked at 13months, walked round funiture from about 11months on tiptoes.would not appear to realise injuries or react as other children did-bang head and just carry on/bleeding scraped knee, not react in any way. constantly agressive and violent towards other children(normal for this age though?)
By 2.6yrs recognising makes/models of cars-hard to explain but would recognise makes of car(not obvious ones like a mini or landrover)
about the same time had to put locks on the outside of living room/kitchen/bathroom doors as he would wake in the early hours, climb over his stairgate and ransack the rooms eg toilet roll down the loo, soap/shampoos down sink/makeup on the walls/mirrors. washing up liquid poured into the coffee/tea jars etc etc
used to line up his cars in a line across the room,bumper to bumper. would resist going in buggy/care seat and go stiff. wanted to be unclothed all the time+strongly resisted getting dressed.

School reception yr- shortly after starting school it was apparent he couldt/wouldnt line up with other children, he would end up lashing out at them. after a week or two of this he started going into class ealier than the rest of the class but it was still a problem to get him in, he would run off, both within ad outside school grounds, Id end up having to drag him(big heavy lad for his age)into the class, who would then have to lock the door to prevent him getting out again.
His behaviour within school was apparently within normal range, he had a behviour chart, but so did about 5 other children.
coming out of school was a nightmare, he would throw his things down, start shouting/being rude and bolt out the grounds-he was nrly run over twice. going home hed be rude, uncoperative, physically aggressive and threatening(glass or anything else picked from the ground). The end result would be time out once home, where he would trash his room then fall asleep exhausted for up to an hour.
before school hed be very uncooperative, resisting getting dressed/washed/into car.
He used to persistantly take stuff from school-mostly girls stuff, hairbands/clips, plastic jelewry, plasic coins/counters etc.
He put his hands down his throat on several occassions, was sick and school sent him home. i sent a "social story" about this into school, it never happened again.
reception yr nativity-walked in with the others then didnt participate, stood behind the stage pulling at the other childrens clothes.
started swimming lessons outside school(group of about 6)wouldnt do as told unless instructor talking to him 1-2-1. rest of lessons spent spinning around in the water and going underwater. stopped swimming after about 1 yr as no progress and he was beginning to spend more time on the side of the pool than in it because of his behaviour.
in reception yr a conners scale was done, it was inconsistant-parrarell to his coping at school.
The only significant incidents at school were stamping ink on the wall of the cloakroom and emptying the contents of the staff sanitary bin.
At home was like a fortress, doors had to be locked behind me (eg if i went to hang out washing or something id have to lock the kitchen and bathroom doors otherwise hed go in and mess about with something dangerous like the cooker/knife block/ or hed take food.i had to also lock the front and back doors to stop him bolting out and lock them behind people when other peolple came into the house. if i forgot to lock the back door he would climb onto the wall in our garden, climb onto the shed and carry a toy up there, stand on it and jump over the garden wall-approx 10foot high drop.

school-yr one
still resisting getting dressed/going into school/running off, slightly less so than reception yr. still coming out of school and exploding at me.
In may 2010 there was a serious incident at home where him and his brother had gone to bed, we heard screaming, ran in and ds1 was sat on/over ds2 and ds was sobbing and had a red, wet face where ds1 had held the pillow over his head. it was a very concerning incident and especially so becuase he constantly says "i want ds2 to die/I wish ds2 wasnt my brother" etc(probably normalish sibling rivalry?)
In the easter before this happened he suddenly started urinating in inappropriate places(after being toilet trained with no accidents since 3yrs) behind the sofa,against the radiator, in the cat litter tray, on the carpet in the corner of his room.

He finds other peoples bdays/xmas hard,seems to trigger lots of outbursts and bad behaviour.
he cant cope with being teased/joked with(children and adults)-ends up having a meltdown.
Over reacts at small things eg piece of his model broke, but before you have a chance to suggest gluing it etc hes already in full blown sobbing/hysteria.

Back to school-yr two
On returning to school last sept, he couldnt enter school the way he used to due to the entrance being temp blocked off, so we persist trying to get him in through reception for one week-it doesnt work. we try another entrance and earlier than the other children again, this seems to work.
during the first week back he ran out of school(after i handed him over to their care) he got a reasonable distance away from the school before he was caught and taken back.
The second week at school he was being very agressive and violent upon entering, school started restraining him on the floor. At the end of the week hed been restrained numerous times and on the friday we found adult finger bruise marks round his arms and armpits(we took photos and informed the school we thought it was appauling)
after this i met with the head and asked that ds wasnt restrained as it serves no purpose other than to make him more agressive/anxious, she said sorry theres no other way. a few days later my partner went in to speak to her again and she agreed they wouldnt restrain him!!

since this sept weve had more involvement with ed psych than recpt+yr1, but the same ed psych observed him in the classroom in yr1 for 25mins and concluded that there was nothing wrong with him and his interactions etc are normal.
the ed psych has tried lots of statergies with him but ideas have only worked for a day or two before having no impact. Im not sure how good school are at implementing them -theres been at least one occasion when they havent implemented what she has suggested.

There was an incident at school in oct approx. the teacher found him in the cloakroom staringat his coatpeg shouting "look at my peg" "im evil" he was apparently quite distressed/angry/agitated and his teacher tried tocalm him, in the process she ended up being headbutted in the stomach and sustained a wrist injury. on collection i was asked by the head to keep him off until further notice(unofficial/illegal exclusion) and he ended up being home for 3 days before being allowed back.The day after the incident he was not himself, he was quiet, withdrawn and wet himself.
At about the same time he started saying things like"you dont love me", "you dont care about me" im puzzled by this, we say i love you to our children at random points throughout the day, and hugs if theyre on ds1 terms. weve just tried to reassure him and make a concious effort to say it more than we do and also when hes had a meltdown or something we try and adapt it such as "we love you lots, but we dont like your behaviour" etc
He was exluded(fomally this time) again in november.This time the reason was persistant distruption in class.

ok so thats about ds1 but heres what proffessional help weve had(or havent)-
been to see paeds twice since starting school, took early yrs history both times, nothing else done other than reistrar checking him eg reflexes, discharged from them. told to go to camhs if continue having problems.
spoke to a different paed in may when the suffocation incident occured, he was very concerned and made an urgent refferal to camhs, he agreed with my concerns and said he was concerned about PDA and the possibility of bipolar.
We saw camhs just before school holidays 2010 explained our concerns, saw them once with ds1, ds1 just sat in the corner playing with the toys. They concluded that although hes challenging again the scores of another conners scale dont add up to adhd(which i dont think he has anyway!) and that we are managing him well and come back if any more probs.

I spoke to camhs again finally before xmas (after leaving about 20messages and noone getting back to me) camhs said they wanted to talk to school so rang them and thenrang me back, they then said that school had said that they think ds1 has an attatchment disorder!! thats the first time ive heard that! so camhs said they wouldnt get involved and that i should do triple p course as school have suggested.

ds1 has been on school action since reception, also nuture groupand they are currently "building a case" for school action plus. they told me this will take 6months and wont be in place for the remainder of the time hes at that school.

There are more indecrepencies/covering up and lying from school but I cant go into any more detail on here so pm me if you want to read that part.

Im really worried about his transition up to the next school, i dont know which school he'll be going to. Ive spoken to the head at the next school up in our town and he told me straight that if ds1 behaves the way he does at his present school, at his school, then he will perm exclude him. he also said "ive been a teacher and a head many years now and im nearing the end of career and i wont have anyone spoil that"!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! !!!!!

I had to pick my jaw from off the floor after that comment! suffice to say he will not be going to that school so now i also have to find an alternative.

well done if youve got this far, thankyou so much for taking the time to read it.
any comments/input etc very gratefully received!Smile

OP posts:
WikiSpeaks · 14/01/2011 21:10

Wow - what a tale. I didn't want to read and run. You sound like a fantastic parent.

Does he have any statement/diagnosis at all?

worriedaboutmyson · 14/01/2011 21:40

Nothing, nobody is prepared to assess him properlySad-other than doing the conners scale which I feel is a fairly crude way to come to a diagnosis of anything anyway!
He doesnt have a statement.

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Popcat3 · 14/01/2011 21:57

You sound like a wonderfull parent, I worked as a dinner lady for a while, and trust me ur not the only mum having difficulties! On a different note, Doctors are only human, it sounds like u have been fobbed off! Occasionally u will find one that will go the extra mile. The only advice I can give to u is to research the problem urself, If u can then go to a doctor and say I feel it may be this, or, can we try that, they may take u a lot more seriously. Its a long process of elimination on ur part, but you have come this far, every child is worth saving x

Popcat3 · 14/01/2011 22:02

You need to be persistent, and use the internet! Online doctors? history of illnesses... libraries... i'm sure something somewhere will point u in the right direction

Pancakeflipper · 14/01/2011 22:08

From what you say the school is failing this kid. Dunno their reason but they are not looking to help him and he's crying out for help.

I think you go back to the second Paed ( the one who sounded to be interested) and say you need help so it goes on record and update them.

And also go to your GP without your son and take a written account of events. This ensures you miss nothing and they can refer back to it cos' hopefully they will be looking at it again after your 7 min alloted appointment time. And you say to them you need help. They need to be in the frame.

And tell Camhs it's not good enough. If it's an Attachment thingy then give you a clue what to do.

I wish you luck. Just keep on banging on those doors. Someone will listen it is just so bloody hard to find the right door - I think they hide behind them.

tadjohndoryp · 14/01/2011 22:14

Sorry, I have no advice to give you. Just wanted to say that you sound amazing and loving and doing absolutely the best job you can. I hope someone with lots more experience in this field (I'm just a secondary school teacher) comes along to help very soon.

abenstille · 14/01/2011 22:17

Gosh , he sounds a tricky one! You sound like youve been having it tough. Im no special needs expert (I am a primary school teacher though) he does sound like he needs more investigation doing. I really don't think youre describing the average child here. Im sorry I cant be more help -just keep chasing answers.good luck

worriedaboutmyson · 14/01/2011 22:26

Thanks everyoneSmile

OP posts:
timetosmile · 14/01/2011 22:26

Sometimes community paediatricians can take a different approach to CAMHS so it may be worth seeing if your GP would consider a referral to them?
I think it's worth going to see your Gp alone for a longer chat, not only about your concerns about your son, but also the impact it is having on you too - it sounds really tough.
Some school now have access to 'walk in' appointments for parents with educational psychologists through a scheme which is similar to SureStart (that sort of initiative, anyway), ask your school or HV if they know anything about it, it varies from region to region
Goos luck!

icancancan · 14/01/2011 22:27

my sympathy goes out to you and your ds and I think you are doing really well under the circumstances. would second going back to GP and Paed service - your ds does need a more thorough multi disciplinary assessment. try also posting in special needs and/or education for more responses.

cornslik · 14/01/2011 22:31

school is saying he has an attachment disorder? They aren't qualified to make that judgement - how absolutely crap. Can you afford to see someone privately?

tomhardyismydh · 14/01/2011 22:34

has he been assesed for autism? sounds like classic traits to me.

the school are failing him and unfortunatly they are influincing the psyc.

do you have much support from gp to get the right assesment for him.

CameronCook · 14/01/2011 22:35

IME you have to keep pushing and fighting to get the help that your DCs need.

DS is autistic and it has been a long long struggle - there are many similarities between your DS and mine - I'm not suggesting your DS has ASD - however you do need to get some support for him in school and possibly for you at home.

Whilst I am Shock at what the potential new Head said, exclusion isn't that easy - they will have to jump through hoops to get it past the LEA, which oddly enough, may result in your DS getting the appropriate intervention / support that he needs.

CameronCook · 14/01/2011 22:36

Oh and you sound like an amazing parent.

cornslik · 14/01/2011 22:38

how did the teacher sustain a wrist injury? Was she restraining him? The exclusion sounds harsh. School sound crap - good job you're moving him.

worriedaboutmyson · 14/01/2011 22:40

No and the fact kills me tbh the only way Id be able to raise the funds would be to sell my car, without which we'd be in a even worse mess.

OP posts:
cornslik · 14/01/2011 22:44

Do you know any better schools for SEN/SN in your area? I am reeling at their arrogance TBH.
You must be absolutely furious.

worriedaboutmyson · 14/01/2011 22:48

CameronCook-you make an interesting point-that thought had crossed my mind about the end result but Im scared of sending him there and him getting failed again and the situation becoming any worseSad

cornslik-Im not 100% about all the specifics but Im waiting for school to comply with my request for a copy of his school file and incident reports etc so should fine out soon.

OP posts:
worriedaboutmyson · 14/01/2011 22:50

Absolutely

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quietlysuggests · 14/01/2011 23:01

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quietlysuggests · 14/01/2011 23:05

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tethersend · 14/01/2011 23:19

I second trying to get your son assessed via the GP.

A couple of points-

  1. Restraint.

What happened/s prior to your DS being restrained? In other words, why were they doing it?

I am a teacher, and train other teachers in positive handling (restraint). I have taught in mainstream, SN and EBD settings. Problems can arise when teachers are not properly trained to physically intervene- not only do they not know how, but do not know when it is appropriate to do so; and when it's not. Is it appropriate to physically prevent a child leaving a classroom? Sometimes, yes. If they are going after another child to beat them up for example. If you believe they will harm themselves or others, then yes. Because they didn't follow your instruction, then no. Deal with it later.

Presently, a teacher can restrain a pupil if:

-A child is injuring others

-A child is injuring themselves

-A child is damaging property

-A child is behaving in a way that is likely to disrupt good order.

Any physical intervention taken must be reasonable, proportionate and necessary.

This means that if a pupil is charging at another holding a knife, you are justified in rugby tackling them to the ground- if they are verbally abusing you, you are not.

The vague definitions do not help- 'damaging property' could mean smashing a window; it could also mean snapping a pencil in two. Legally, you could restrain a child for this, but ethically? It would be completely inappropriate. The legislation relies on teachers' judgements of what is reasonable, proportionate and necessary, and there is rarely any provision to train them to effectively make that kind of decision.

As a teacher, you have a duty of care to keep children safe, and act in loco parentis.

Whilst I understand that your son was injured by restraint (and this in itself would indicate to me that staff weren't properly trained), the duty of care extends to other children in the school who also need to be kept safe. Keeping everyone safe is key.

One thing jumps out at me: you say they are restraining him to the floor? Floor holds are a very, very, very last resort (see my example above), and should only be used as part of a very detailed physical handling plan (your son should have one if he is being restrained). I have never restrained a child to the floor in a mainstream setting. Any restraint has to be reasonable, proportionate and necessary by law. Do you know if he was held face up (supine) or face down (prone)? To hold a young person prone is now illegal, even in the most challenging settings.

Please PM me if you would like to give details of the restraints or if I can be any help.

  1. School does not need to 'prepare a case' for a child to move from SA to SA+, and this would not usually take 6 months. A child usually moves to SA+ when an outside agency (such as CAMHS) becomes involved. Also, moving to SA+ is a good thing- it means they recognise his difficulties and are required to put more support in place. It also strengthens your case for EP assessment, as it is the stage before statementing.
  1. Be very careful with attachment disorder- school are most definitely not qualified to make this diagnosis, but attachment disorder seems to be flavour of the month at the moment WRT a lot of teacher training. I say be careful because a lot of the symptoms are similar to ASD, and even an expert can have difficulty in separating the two in some cases. It is not a term to be bandied around lightly, and is a very complex disorder- as is ASD.

Sorry for lengthy post.

Kayteee · 14/01/2011 23:23

Have you thought about home educating? You sound like you're really in tune with your child :)

quietlysuggests · 14/01/2011 23:31

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Message withdrawn at poster's request.

tethersend · 14/01/2011 23:34

Agreed quietly- nor should the school be absolved of their responsibilities to him by OP HEing.