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

[worriedaboutmyson]

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 behviour 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!

Bump!

Sounds like he isn't happy at school for a start, and that they don't know how to deal with him. Otherwise he sounds very much like my DS2, who has ADHD and dyspraxia, and once on a car journey punched his younger brother in the face for no reason at all. Cue much blood, screaming and general panic.

No idea what you can do, mind, as you seem to have tried the obvious places.

Lots of markers for autism spectrum disorder if you ask me. Have a google and see what you think.

I really don't understand why it will take 6mths to get to SA+. My (admittedly limited) understanding is that SA+ is what it's called when outside help is needed - which to me describes your ds.

I would say that there's possibly a lot of sensory issues going on but I'm obviously not an expert. The anger reminds me of one of my boys (ASD) but he tends to take it out on himself so it's not always so obvious IYSWIM.

Have you heard any more from the Paed who mentioned PDA and bi-polar?

I have NEVER said this to any other poster because quite clearly I am neither qualified, nor is via an internet forum appropriate to do, but it's crystal clear to me your boy has ASD.

FFS what is wrong with these people?

Has any mention been made of ASD? Have you had any ASD-type referrals? Have you yourself looked at the NAS website.

Your poor poor son! And poor you.

I dont understand either,that was my understanding too.

Sensory issues-I agree,had thought about that, he has to go to bed with particular pillowcases that have "zigzags" on them, he often sleeps in his duvet/sandwiched under the fitted sheet. hes quite fussy about the feel of clothing/shoes. He also enjoys spinning+squishing.he used to frequently hit himself round the head when hed made a mistake, doesnt really do it anymore, although he did do it last week.

Not heard from paed since phone convo back last may, but am in the process of writing him a letter with the above info and other bits so he can see whats gone on, I beleive he may be the key out of this hellish mess.

I have thought about ASD but want to hear what others think too, becuase maybe its just me that thinks that, if no "proffessionals" do?

Oh the other thing about ASD is I dont think hes had any speech delay/S+L problems-although Im also aware that these arent always easy/obvious to spot by the untrained ear

Hi worried welcome to the board. I'm not sure what to say other than for a diagnosis of aspergers there does not need to be any speech or language delay. It sounds like you had an understanding Paed who mentioned PDA and bi-polar is there any chance you can book another appointment with him and show him what you have posted on here. Trying to suffocate a sibling does not sound like normal sibling rivalry - I'm so sorry to sound harsh.

You don't need speech delays for ASD. Google Aspergers.

I too strongly think ASD. Strongly think you need to apply for a statement. ( you don't need a dx to get a statement). I hope you can find a better school.

And keep posting here.

No, thats ok, I need people to be truthful and straight with me. I have limited knowledge of what is and isnt "normal" as he is my oldest child and especially as the experts always say all kids do x y z how do I know wether he is within the normal range?

No. This is NOT normal behaviour and he is suffering as a result of others not understanding how to handle him.

You need to get demanding and I agree, apply for a statement. This will ensure that lots of professionals come out of the woodwork and start taking notice.

Read up on the triad of impairements. Circle everything that rings true. If he is up to it, get your ds to ring everything that seems to be true to him too and take it too your GP and ask for a referal to an ASD specialist asap.

Is there any chance of getting a referral to an occupational therapist? I think a sensory profile would be really helpful.

In this respect he reminds me of my 7yr-old - a mixture of sensory-seeking behaviours but accompanied by areas of hypersensitivity. So my ds would happily throw himself against walls and doors without feeling a thing but would scream and cry if you tried to dress him in the 'wrong' material. Even now he very rarely wears clothes at home except for pants.

Anger management techniques have had some success in reducing outbursts but it's a long process and there's still a long way for us to go.

Sounds like ASD to me too (Mum of child with ASD) but interesting other parents with different kids think dyspraxia etc also fit

The 'you don't love me' 'I'm evil' sounds more like a child who is confused by his own behaviour eg why do I act like this, why am I different. Sounds like things get worse when routines are changed eg holiday to school routine etc

Read up on ASD / Aspergers (look at NAS site and you can borrow books for free from Cerebra website). I would ask your GP or the helpful paed for a referral to a tertiary ASD centre eg Elizabeth Newsom Centre in Nottingham or Lorna Wing (NAS) assessment unit. I would say that you feel you need ASD / PDA to be definitely ruled out and your son has already been seen by 2 paeds and CAMHS, PDA has been mentioned but they are not prepared to make a diagnosis and perhaps not qualified - some ASD diagnoses are difficult and thats why places like Eliz Newsom etc exist

You should also apply yourself for a statutory assessment of SEN (see IPSEA website) not wait for school - if the EP sees him he is already at action plus! There is no work involved in going to action plus it just means an outside professional is involved. Asking for a statement can be a good way of making a diagnosis happen faster as the SEN officers must have evidence to decide if provision is needed and if so what type and they can only get that evidence from paeds, CAMHS, EPs etc.

Do you have any local behaviour (BESD) or ASD outreach team run by the local authority? You need to get specialists to spend enough time with him and see enough behaviour to actually evaluate whats going on.

Once you know what you are dealing with it will get better. You will be able to learn strategies and so will he.

There are quite a few private schools for Aspergers etc - a statement will open up your options for secondary.

The other thing you could do if things are a bit desperate is to move him to a school that has a lot of experience with SEN eg they might have a BESD or ASD unit attached to it. Sometimes just going into the main part of a school that has a unit can bring you to the attention of the specialists who work in the unit and can lead to intervention happening more quickly. You would need a statement to get into the unit but not to get into the main part of the school and those schools are usually good at getting statements sorted out.

A school cannot diagnose an attachment disorder and CAMHS cannot let a school diagnose an attachment disorder - what will they let teachers dole out antidepressants next?

Try ringing your local Parent PArtnership service and ask them for a list of schools and whether any have particular expertise in BESD or ASD or what outreach services exist.

You need a better school and an out of area referral for a full diagnostic assessment.

You also need to write down all this crap you are being told. You might need to quote it later on if you have to fight for provision.

Lots of good advice already but here's my twopenn'orth.

Firstly give yourself a huge pat on the back for getting through this so far. You've been badly let down by this school.

Secondly download a copy of the SEN code of practice here and read the part about school action and action plus in primary. You can then quote it at the school and insist they put him on SA+ now.

Thirdly you need to contact your local parent partnership service and find out what specialist teachers there are for children with ASD in your area. Get their number and ring them to request that they come into school to assess your son. If the insist that the school has to invite them in do what I did. Go in to the head and offer to complete the form yourself.

Then Google ASD, Asperger's syndrome, triad of impairments and find one of Tony Attwood's books on Aspergers. Go through them and write down everything you can regularly see in your son which fits the ASD profile.

Go to your GP and request (firmly) a referral to CAMHS or a developmental paediatrician or whoever it is who is responsible for diagnosing ASD in your area.

You need help. Your son needs help. If you do all those things and he doesn't have ASD he won't get a diagnosis but he's far more likely to get the support he does need.

Good luck.

I think it was discussed because of maternal psych instability on my side of family and partners paternal breakdown/manic depression.

Thankyou for all the advice
Again I just want to say I really appreciate everyone taking the time to read and reply to this, I value your unbiased input.

Please, please read my thread 'ok here goes...'

I see parrells with my son, lots of them and I know how bloody hard it is.

I think I understand my son and I FINALLY have a head teacher who understands him and is helping us get support.

We have had a common assessment framework (CAF) done and all of a sudden all those agencies who wont touch him with a barge pole WANT to be involved.

I was where you are literally in October though Scallypants has first assaulted a teacher and been restrained only recently in December.

The comm paeds are throwing in a ASD / ADHD as possibles but his head teacher is pretty certain that in ADDITION he has an attachment disorder.

PM if you want and huge hugs x

Hi

I am sorry you are having such a hard time with getting help and more information about what is going on with your son.

I don't think it is clear from these details - or could be - what is happening.

What you are saying, from my reading, is that there have been persistent concerns about behaviour since early childhood in the absence of diagnosed developmental difficulties, with quite a lot of destructive/aggressive behaviour and confusion/self-loathing beginning to manifest as he grows older and begins to realise that he is different to others.

Some of what you describe may well be consistent with an ASD but there are potentially a number of other possibilities that require a full multidisciplinary assessment. Many developmental and behavioural difficulties can present in strikingly similar ways. As Agnesdipesto mentioned, many posters will read your description and find parts resonate even though their children have different dx. For me on a personal vs a professional level, your description reminds me of my cousin (now 26) who has a schizo-affective disorder. Your son may even yet fit more than one diagnosis.

Again, it all comes down to one thing: he needs an appropriate multidisciplinary assessment as Agnesdipesto outlined. Can you go back to the paed who sorted an urgent referral for you? Is this the one you are writing the letter to?

I hope you get answers soon as they will be the key to the help you and your son so desperately need.

BTW I moved my son from the school that treated him like your son is being treated.

I know it's a huge move and I know you might be worried at the potential for it to make things worse but the alternative?

To facilitate his mood I did put stuff in place to support him at home but at personal cost to me but hey ho it has been worth it x

I won't repeat good advice already here from other posters but did want to say I think you have been treated appalingly by camhs and by the school. I am disgusted on your behalf that camhs didn't return your messages,did not even see you or your son, instead relied on the school to make a diagnosis for them! I would advise contacting pals - patient advice and liaison service - for support in pursuing a complaint about their unprofessional treatment of you and your son.

As for the school, the idea that it could take 6 months to set up school action plus is complete nonsense - all sa+ means is that they ask outside agencies for their advice and involvement. For them that means a 5 minute phone call or 20 minutes writing a detailed letter. Ok, there may be waiting lists before another professional is free to see him, although I would have thought his case would count as an emergency referral. Like others here have advised I would suggest you circumvent the school's delaying tactics by applying direct to the lea for an assessment for a statement. You will also get good advice and support from organisations like ipsea, sossen and the national autistic society.

I agree with working9while5 that no-one on this board can be clear on what is really happening with your ds, worriedaboutmyson. However, aspergers has in the past been described as schizoid personality disorder, hasn't it? Until they discovered that the aspergers personality is actually a very stable personality if handled properly. I also know that some people with aspergers have in the past been misdiagnosed with manic depression or schizophrenia, these mental health issues apparently disappearing altogether once they were approached as someone with an autistic spectrum disorder rather than someone with a mental health illness. The same applies to attachment disorder - this also has many overlapping features with autism. I'm sure it can work the other way too, of course (wrong diagnosis of ASD and therefore wrong interventions), which is why a proper assessment from someone who isn't biased in favour of only one point of view needs to see your ds. And of course, it is possible to have an ASD and a mental health illness like depression, manic depression or schizophrenia (depression being particularly common, since it is unbelievably depressing to be badly misunderstood...). You just don't want someone treating your child for completely the wrong thing, or only dealing with one aspect of their problems! Personally, I find it incredible that you should have received such inadequate support for such a long time, and given the issues seem to have been obvious since babyhood would also have a bias towards an ASD being an extremely strong possibility - albeit that is a totally unprofessional opinion!!!!!

ps I think schizoid personality disorder does still exist as a diagnosis, doesn't it? It's just that it is recognised these days that aspergers syndrome is not at all the same thing.

My Goodness,Do we have the same son??? I have three words Autistic spectrum Disorder!!!! Get a appointment with the child development centre Do NOT take no for a answer!!

I agree ASD, but obviously you need a development paed/multi assesment. Sorry you have had a tough time. Good luck. :)

Would he like to come round to play? He would fit in very well here. Seriously, you could be writing about my son (adhd, ?asd, anxiety, now starting with violence, odd type and depressive stuff). Does sound asd to me, but agree with 9to5, lots of disorders have similar symptoms. If he's too difficult for your local services to figure out, they may try "he's ok but weird/ has bad parents" to get rid of you. Don't accept c**p, there's a specialist multidisciplinary team at Great Ormond Street for kids who the local camhs can't diagnose.

He definitely has 'something', it's clearly serious, you haven't been listened to properly, he obviously has great parental support and you absolutely cannot and should not have to do everything all by yourself.

He very clearly needs a diagnosis, treatment plan, statement (and not a crap one), family support eg respite funding, specialised parenting courses (start with NAS, their courses are great and filled with stuff that will help even if he's too much of a puzzle for a pure autism spectrum diagnosis), etc etc.