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!

Second the ASD. he is spinning. Spinning = ASD in my book. But he might have other stuff too. You need to see a developmental paed at the hospital. Lots of people on here went to BIBIC. I have no experience but it might be worth looking into.

He has a something and I'm really sorry to tell you, a fairly biggish something. You've done tremendously well so far. He needs support and some individual time at school where they can specifically teach him social skills, social stories, etc.

Really recommend Sandy Row(e?) 'How to Be a Velvet Buldozer' Coping with the Special Educational Needs system. She has four children who all have SEN.

The school are bananas. If they have called in the ED Psych THEN YOUR SON IS ON SCHOOL ACTION PLUS - what they are seeking from the LEA is funding for him. It can take ages for the LEA to actually read anything sent to them (bitter experience here). You can apply for a statutory assessment for a statement but I would hold off until you get a diagnosis.

It's a long rocky road this SEN lark but you do meet or have contact with some pretty fab people on the way.

Thanks for your help everyone,
Just a few more things, again not sure if anythings relevant

ds1 always seems to be in a competition, getting out the car, getting in the front door, to the dinner table is bad loser and triggers outbursts
He gets a much greater amount of stomach and headaches than his younger brother
I feel his impulse control for his age-6.11 is very poor
Hes very into his teddies and soft toys, his bed is completely covered and he wont get rid of any, not sure how he manages to sleep with them all
he picks stuff off the ground alot when were out and will often eat it if its edible
I was walking through town with him one day- about 18months ago when there was a trickle of "fluid" running from an ally across the pavement i walked on, realised he wasnt beside me, looked round and he was bent down, putting his finger in it and before i could stop him-in his mouth I said "why did you do that" he said "I wondered what it was"
I realise kids do this sort of thing in toddlerhood, but do they still do things like this at 5/6? His younger brother has not done anything similar
In tescos last year, we were in one with a trolley esculator we were packing and paying for our shopping, ds's sat on a bench opposite, looked up from packing,ds1 was sat there, moments later looked over again and he was not, spotted him by the esculator holding the "hand belt" bit and I start to run over and hes started to go up the outside of the esculatorI got to him and grabbed his legs and pulled him off, thankfuly unhurt
He damages property alot again do all kids dthis stuff- burning holes in the carpet with an iron(hes found the iron in my room on a tall chest of drawers, had to climb up to get it and burnt 2 carpets in different rooms) when his dad came home he said "whats this???" ds1 replied "I think it looks quite like a triangle daddy"
scratching the tv(it wasnt during a meltdown)taking a vegtable peeler to the funiture in mine and dh room! using dhs shaving "brush" and some paint he gleaned fom somewhere and painting our pine sideboard dark green posting toast into the pc disk drives etc

I dont feel he has any obsessions as such, its quite normal to be particulary interested in certain things our his age isnt it, hes very into star wars, but also likes dr who, ben ten and club penguin. does food count as an obsession? hes forever hungry, eats extraordinarily fast and doesnt seem to registar hes full into hes got a stomach ache-prob because he ate it so fast!
he has alot of meltdowns about food but we do have to try and limit his intake, hes over 6st and its very hard to motivate/get him to participate in exercise, unless as with everything, its on his terms.

Oh I was also told by the school liason persons line manager that "what would a diagnosis acheive"? she said the approach would be the same in that the work would be with you not ds1 whatever he was/wasnt diagnosed as and that people with ASD do not use medication to manage their behaviours anyway

Well, school liaison person is a bit stupid, then, unless she proposes to send all teachers and teaching assistants at your ds's school on a very lengthy course to learn how to handle your ds and to pay for the extra materials required to cater for your ds's needs and get some 1-1 support. Getting a statement would be much easier with a diagnosis, which would then require the school to understand that it has to do something for your ds, not just assume it's all about how you deal with him. A diagnosis would also enable you to get in touch with other parents who have children with similar diagnoses, so that you don't feel so isolated.

ps your ds's sensory seeking behaviour, inability to understand boundaries and inflexibility are not normal for a nearly 7-year old boy.

What is your ds2 like? Is he completely different????

Completely different, couldnt be any more different than ds1

ds2 is 5.2 btw

Hi there, I just wanted to respond to you. Well done for managing this far. My son is 4 with an asd dx and presents similar behaviours to yours ie spinning and sensory seeking.
You sound like you have been fobbed off to be honest and I am so glad you have posted on here where you can receive impartial advice. I think sometimes the professionals fob you off for the sake of budgets etc but you need to be very persistant!! As the others have mentioned, dont take no for an answer. You also mentioned food and tummy issues. I put my ds on a gluten free diet over a year ago with limited dairy. His behaviour changed overnight. Anyway, your DS is lucky he has such a strong mum who is willing to seek answers for his behaviours. Keep posting on here! There is heaps of experience and advice you can tap into

Sorry it must be hard for you to have to get answers via the internet. A diagnosis will achieve understanding - he is not naughty or violent just functions differently and the world is perhaps confusing for him as a result. He may not understand why he does not get others and they do not get him. A diagnosis can help him make sense of things. It can bring strategies, help, support and money eg DLA, Carers allowance etc which will make the extra you have to do for him easier to achieve. It can stop his behaviour spiralling into anxiety, depression, self harming. It can help find him a school which is caring, understanding and perhaps where there are other people just like him.

Always wanting to win, looking at things in a very concrete way - what does it taste like, rather than with full understanding - being on own agenda. Again these all fit with ASD.

Cerebra have some Tony Attwood books you can borrow for free here

Blimey, - having read this thread again, to the uninitiated it must look like we are some kind of ASD cult wanting to recruit members but I can absolutely promise you that I have never seen a thread like it before.

Generally, people gently suggest a referral to a dev paed and hint that there are some red flags that might signal autism traits and that is about as definate as it gets.

I hope you are okay about all this. It must make you really anxious.

Is it really that unusual?

ASD is not unusual no.

However, all the peeps on this board telling you straight off "Sounds like ASD-Go seek help now" is very unusual.
Sorry if we are all blunt. As parents, we realise the importance of getting help as quickly as possible.

Absolutely, all the evidence suggests that the earlier the intervention, the better the outcome deosnt it. Thats why the more times gone on, the more urgent the need for someone to actually listen to me has become.

Given how you've been given the run around by school and cahms so far would really recommend you get some support on board for pursuing all this further. For school you could start with partnership with parents who are local to every lea. You may want support from independent sen charites like ipsea or sossen in due course. With camhs you could either ask pals to get their practice manager to review their poor treatment of you or ask your gp to refer you to a developmental paed instead.

We got to age 6 and yr2 as well

It's CAF that 'seems' to worked.

Tho our meeting is this coming week so hold that thought!

Hi. Have you booked your appt for GP yet? Print out and take your post with you. Try to get them to attach it to the referral form. Tell the GP you've spoken to x mums of dc with asd, and you were struck by how strongly they urged you to get help, and how much your ds seems to resemble their dc.

You can say we're your 'informal parent support' group... a lot of GPs are a bit worried about internet nutters winding their patients up. I'd say your GP is unlikely to 'get' the MN SN board's reliability (unless of course their own dc has issues).

Don't mean to hijack the thread but we are in a similar position (now going to go private as CAMHS keep discharging us with things like 'immaturity' or passing us to other teams which just pass us back to CAMHS) so was interested to know that that there was a team at Great Ormond Street for children such as mine! (Thank you Maria Magdalena). Concerns about DD have been voiced to medical professions since she was 12 months old and now she is nearly 6 and we are no further along.

Yes, we've also had the 'crap single parent' stuff - it's depressing. We were also told that specialised stuff for special needs didn't exist and that the only thing that did exist was Webster-Stratton and nothing else. When I later found out this not to be true, I still wasn't able to access the courses we (and imo the school) needed as we don't have a diagnosis yet.

Thank you to everyone who has contributed to this thread as it's made me feel so much better.

For the record, paediatrician has been convinced for years that it is an ASD but that she is difficult to diagnose as she doesn't fit all the descriptions of classic autism or anything like Aspergers or ADHD (though there are elements). She can not diagnose but only refer us to CAMHS! Since learning from here about PDA, I'm convinced this is what DD actually has but until we have a diagnosis my child is just 'naughty' and 'immature'...and I am just a crap parent but they understand because she is an 'only child'!!