ok do I start bawling and demanding or what?

[coff33pot]

Ok today is a down day. :(

DS has seen Ed Psych last week and she said she was going to immediately refer him to CAHMS and to wait for there phone call. She hadnt finished seeing my son yet and had to see him in his class environment at another time but said she would refer him on the results she had seen so far.

HMMM been waiting only a week mind but it feels like a lifetime when your DS is stressed out and no one understands him at school. To hear him say he eats dinner on his own because his peers think he is naughty. He said he tries to sit with someone but they get up and move. He is forever getting told off for running away from class and hiding under chairs or tables (at home he uses a blanket to hide himself if he is upset)

I have tried to talk to him about telling someone if he feels upset so perhaps he can go for a walk around school field or something and then go back to class. Told him I know how hard it is to calm down but we must try other ways to let ppl know he feels bad.

Two days ago he managed to join in PE and line up without much ado (this was a first!). The teacher called someone else to show a particular jump. My DS got upset and told her he was upset because she had not picked him as it was something he could do. He didnt run off but bit his arm instead :(

I am totally distraught at this to think he tried to hurt himself to curb his feelings.

I am getting a home book now which is great but to read this...........

He is constantly 1 to 1. He will do art and creative work and learn through play ie. word bricks and phonic games. He will recite a spelling but wont write it down. From the pattern at the mo in the book he tends to run when he is doing a work sheet maths/literacy. Starts it and then runs for it and hides. Teacher is saying he started the maths and found it quite easy (how does she know?)

Last week there was a riot owing to the fact he broke a childs model (this I put in another post) it was a chair and he sat on it so couldnt comprehend that he had deliberately broke something belonging to someone else. The meltdown started after the HT told him the little girl does not want to play with you anymore. This resulted in an all day run around in school with DS finally being locked in the HT office with HT. It started in the morning and I didnt get called till 1.30! Of course as you can imagine my DS resembled a wild animal with no sense and no reasoning. The school wanted me to have a good long talk with him HELLO! he is in full meltdown mode

The school itself is a great school dont get me wrong and they recognise that DS needs help which is rare so I am lucky in that respect. But they are still treating him as Mr badly behaved. And keep asking me to comment in the book on how I discussed the days events with DS.

Yesterday he woke up in what I call "his own little world" he was totally distracted in everything and I just dressed him robot fashion and he ate his breakfast still gazing into the distance obviously thinking about whatever adventurer he was going to be. He wasnt angry or resistant to doing anything just lost in his own head if you know what I mean. I TOLD the school he wasnt there today so dont push him too hard as he is going to be easily distracted. He read (athough I think he knows the books off by heart with the pictures as he doesnt look at the words so is guessing till he gets it right but that is another story :)) did a couple of spellings but then they tried phonic work again and he ran off under the chairs. They got him out and he had to have time out in another class. When they got back he did do some writing but then had to colour in a pic with it and he scribbled over it and ran away again.

I do talk to DS about his behaviour but obviously I am more concerned as to the reason why. Why is he stressed, why did he resort to biting himself, and I am more concerned with trying to find a way for him to suppress it enough to speak out (he has no language barriers) before the bomb erupts. Whereas the teacher looks at it as he is being naughty and I should be telling him off and repremanding him for not sitting still etc

HOW do you tell them that this is no way good but he cant help it? That he is fighting with himself to control it which is what I see at home. HOW do you say what the signs are? I have tried to warn them if he is heading for difficult day and to CALL ME as soon as he hides.

I phoned EP and mentioned the referal to CAMHS. She now said that she needs to see him again first to do full write up for them. For gods sake WHY tell me different at our meeting then?

She did say it would be faster to go to GP to refer to a pead as all the stuff she is doing could take 6 months. First GP said nothing they could do till they got report. Got the same one phoning me today and he said same thing. NOW I have booked an appointment with another GP for 4.30 but I need some "structural" help to talk to this GP without putting my hands around someones neck and giving them a good shake!

Sorry for ramble but I have already broke a cup because it fell out of the cupboard twice so I smashed the bloody thing as it obviously wanted to break lol That is the sort of day I am having.

Right it's time to get stroppy. My tips are write down a general timeline for ds from birth until now. Put in his milestones,any difficulties he has had, behaviours you have noticed. Take ds with you (hope he's not on his best behaviour as well ) get to GP's and sit down and make yourself comfortable. Show the GP the paper and say I have been advised that I am to request a referral to a paediatrician for ds by the school and Ed psych. This is an outline of his development so far. Currently school and myself are finding him increasingly difficult to handle, his behaviour is disruptive, frightening, dangerous, confusing etc.
If it looks as though the GP is going to dismiss you repeat I have been advised that my ds needs to see a paediatrician someone with knowledge of developmental disorders. Other professionals share my concerns and only a specialist can reassure me that that I and school and ed psych shouldn't be concerned. So I am wanting a referral made today.
If ds is like my ds was he'll be running riot, DO NOT rush or try too hard to limit ds and make no indication that you will leave without a referral. Sit back and keep your nerve. The GP is under pressure ds is running riot and the queue in the waiting room is growing. Hold your nerve you'll leave with a referral

Great advice from asdx2.

From what you write it sounds like the school have no understanding of yout little boys difficulty. He's stressed , he hides so he has t/o in another class, full of other kids which is probably also going to be stressfull - pile it on why don't they!

My son's school has a library area for th whole school and there is a little ikea tent there. If your little boy needs to hide couldn't they rpovide him with a a safe space like a tent wher he is able to go when he needs to escape.

Writing is obviously a trigger for him........they don't listen to you..........they don't act on your requests......I'm afraid I'd disagree on them being a good school. Sorry if that's not what you want to hear.

Has your wee boy been diagnosed or is that what CAHMS role will be in addition to hopefully getting him some helpful input.

Ask them to keep a diary of his behaviours for a wek then have a meeting with you where you can look at the situations, discuss what happened in the lead up to them and maybe you can tell them what the triggers are and how best to avoid them. If they really are good they should be open to this as it will help your son and the adults in his class.

So sorry he is having to experience this every day. Hopoe you can get something worked out so that he has adults working with him who are intuitive to his feelings and moods and can help him to positively manage his time at school.

hugs xx

No advice I'm afraid, but some hugs.
Good luck with the GP - asdx2 has some good ideas!

I would have to agree with asdx2 - this school are not great because they are not listening to you at all and labelling him as Mr Badly Behaved.

I feel that even if your son had more support there in terms of a Statement they'd still not want to effectively help him.

asdx2 has suggested good counsel re the GP and I would also suggest you take heed of it. You can and should get a referral today; all they're currently giving you is the runaround. GP can certainly refer to a developmental paed immediately without waiting for any reports etc.

You will learn to recognise their lies and weasally words; ask for everything as well in writing!.

I would also start looking at making a request to the LEA for your son to be statemented. A step too far for you perhaps at present (and you sound completely overwhelmed by it all. However, you cannot afford to be overwhelmed now) but a Statement is the surest way of your DS receiving adequate support at school particularly in the longer term.

You are your child's best - and only - advocate. No-one else is better placed than you to fight his corner for him. No-one else either will do it for you.

Coff33pot many moons ago I was a very reasonable, undemanding, considerate and flexible parent and along came ds. I quickly realised that if ds was going to get what he needed then I was going to have to make sure they listened. I actually don't recognise the person I used to be and that's sad in a way but I would have been walked over.Nowadays I demand, I tell them what needs to be done and I give them earache until it is done to my satisfaction. I don't doubt I am unpopular BUT ds and dd get what they need when they need it. I don't need the professionals to be my friend or even like me I just want them to do their fucking jobs and they know that they need to do it well to keep me happy.
You can do just the same you know, you know your ds and what he needs have the confidence in yourself to make others listen.
Would second the need to write to LEA and request a statutory assessment for ds as well.

Thanks both for posting :) My keyboard seriously needs ibruprofen for the bashing it has had lol

Some really great advice. I made the appointment for me alone as I really wanted to get my point accross without DS distracting me BUT I think you are right a hassled GP just might to the trick. And he is bound to play up because this is the first time his cousin is coming to tea today so he will be not impressed that I got to wiz him away. [sneaky emoticon]

I know its a long wait for these things to progress and I am a I want it like yesterday person lol but DS is getting worse as time goes on and I feel if the school just took a step back and LOOKED they would see the signs. At least he still wants to go at the moment but his frustrations are getting higher and I keep dreading the thought that if they have a door open he will just run out and with no road sense at all it doesnt bear thinking about!

We have one week to go before half term so I am going to book appt for middle next week with the school UNLESS I have another serious crisis like them locking them in and then my appointment will start there and then as far as I am concerned.

Its just that I get mad/sad/frustrated all at the same time and it is not a good mix as you dont think straight and want to blast anyone in your path :o

coff33pot,

re your comment:-

"and I feel if the school just took a step back and LOOKED they would see the signs".

They will not see any signs. Many teachers as well are not at all trained in any aspect of SEN, it is not readily taught at teacher training college. They would not therefore recognise a clear example of anyone being on the autistic spectrum.

How do you feel about the suggestion made re personally making a statement application?. We'll hold your hand!!.

Sorry not getting back quicker lol vented my rage on the poor van insurance man on the phone who got wrong. (trivial but he now feels he commited a major crime lol ooops!)

@Shaz/Attila
DS is 5yrs and the school in fairness are pushing for a statement for him so the statement part is still in motion. They did also say he they will still have him with 1 to 1 even if they dont get funding (we will see). EP has seen him and done her cognitive tests they were for a 7yr old and he plainly just did them. But she has not seen him in his class environment yet. Or in the playground which he is not allowed in and has to play in the nursery courtyard with a friend of choice. This is upsetting because the "friend of choice" is saying to him they really wanted to go and play with there "friends" :( The EP can see there are issues in the school and with DS and that is why she said she would refer him straight away (lie no 1 ) You put trust in these ppl because you are green at the whole thing and stupidly believe they care what happens.

The signs are looking at DS has AS/ASD. I have searched the net and some good sites recommended here and it is my son I see written in them.

My other two children are NT so this is my first experience on a child needing help of any kind. Yes I refused to believe it at first and put it down to he is just different and because I can handle him there was no point making a fuss. But now he is in school the lad is crying out for help from every pore and the school obvioulsy cant handle him and I am now pissed off to put it so bluntly and biting at the bit.

@ Attila
Yes I see what you mean about schools not being trained. And DS teacher is new and this is her first class which doesnt help matters at all!

But you would think (there goes a flying pig) that because they dont have the training they would take you seriously when you are trying to help them both understand and deal with your child

hi coff33pot ive just been through this too and got ref to CAMHS and although what he was doing was extreemely serious was still made to wait 16 weeks they just gave me a number if things get "to bad" to ring ...it already was too bad doh, if you get to that point id say everytime a serious incident happens you have to ring the number as enough times they might actually bring the appointment forward as self harming should make the EP hurry to refer , as shes being awkward id ask the gp a good one with a bedside manor lol(if you can find one they are rare as rocking horse poo) to chase the EP up saying hes begun self harming so get an Fin move on or on your head be it HTH and have a bath n a bottle to de stress or chocolate omg we will all be alcaholics going to fat busters next

Hi Coff33pot,

re your comment:-
"the school in fairness are pushing for a statement for him so the statement part is still in motion"

What have they actually done to date re this?. How far along are they with regards to a Statement application?. I would establish both points with the school as a matter of urgency and don't let them fudge the issue.

If they have not made the application I would strongly urge you to now apply yourself directly to the LEA. You would have far more clout applying for it yourself anyway.

Also if school apply and the LEA say no the school have NO right of appeal. You as parents do so you need to ideally make the application. Also schools can sit on such things for ages and not act, have seen that at first hand and delays cost.

Good luck at the GPs later on.

Hi Coff33,

So sorry things aren't improving with school.

I'm afraid have no more advice, except to say, listen to Attila, she really knows her stuff and gives excellent advice.

Oh yes and good luck at the GPs this afternoon. Let us know how it goes.

ahhh moosemama, you don't have to be scared of little ol' me:).

P.S Do post that letter off to the LEA asap!!.

Yes maam, I'll try my best not to be in future.

I am going to post it - honest. I've been working on the school and one or two other people to support our application and trying to get my head around exactly what we want. I'm almost sure it'll be refused first time round, as ds has quite a lot of new intervention planned and I reckon they'll want to see evidence that none of that's working before they'll even consider doing an SA. Also needed a breather before picking another fight after the whole fight for dx. Its been just under a month and I'm just about ready to start kicking butt again now though.

Hi moosemama,

No curtseying is necessary, honestly. Oi'm a sweet n' cuddly meerkat really. Would you care for some ?.

Good on you for trying again re the Statement app. Do keep us posted as to developments.

Aw, go on then. We need a cake emoticon now, so I can offer something back to you.

Bear in mind as well that there is a vast difference between being able to speak and being able to communicate. Your ds may know the words to say he's upset/angry/overwhelmed, but at the time it's happening, even afterwards, he may not be able to communicate that fact. It is up to the teachers as well to observe the trigger signs, to notice when he starts getting, perhaps, agitated and to try and help him. Sometimes it may be as simple as acknowledging to him what it may be, eg "are things getting too noisy for you?". Othertimes they may just suggest he goes somewhere quiet until he's able to tell them.
The running away and hiding under tables and chairs is symptomatic of him trying to get away from a stressful situation. Ds1 often goes and hides under tables or under blankets or behind couch cushions. So the school should be trying to find out why your ds is running away, rather than telling him off.

I think your DS finds writing threatening. Sheets of paper to write on and possible get wrong is scary.

I would ask them to get him to do his maths on the computer (there's www.ictgames.com which covers nearly every aspect of KS1 maths). His letter writing can be done in sand until he's gained confidence.

This is all very doable if he has 1-1.

He sounds like he needs full time 1-1 for a little while.

My DS (ASD, 6) has terrible trouble with PE. We sent in a sensory OT to observe and she said he finds the movement uncomfortable (hypermobile) and watching so many children's movements difficult. She is now working on ways to help him in this area. It isn't cheap!

He needs a safe area in the classroom, a low sensory area so he can calm down.

If your DS gets a diagnosis, it may be appropriate that this is shared with classmates. Once children understand differences they are quite accepting of it.

Keep nagging about that statement. Once my DS got his the school stopped labelling him as 'naughty'.

Spinkle just reminded me that when ds2 had his regression after being ill the first time, the school used sand trays, playdough, paint etc to help him with his letter formation rather than knocking his confidence by making him sit and write. A lot of his numeracy was pictorial as well.

The school should really be thinking around why he is so resistant to written tasks and coming up with solutions that build his interest and confidence, rather than labelling him as naughty for avoiding something he can't cope with. This should be easily possible for them to organise, considering he already has 1-1 support.

Hope you got on ok at the docs.

Hi! sorry manic here from school colletion till docs and beyond so no chance of coming back to you!

There is good news! :o

I think I must have scared the S**T out of the poor doc and he probably thought it was me who needed help but do I care? NOPE

He has agreed to refer my boy to the pead :o :o

I collected DS from school and today has got to be the worst day he could have had. Walked in and they said in front of him "oh it has been terrible today!"

DS has set routine ie. coats hung up first, drinks bottle to the side, book bag to the side table and then off he goes the rest of the day is time tabled. He has to be told singly each job he has to do as if it is directed to whole class in a full list he gets in a muddle. ANYTHING out of the norm and look out. Sooooo what did they do today you ask...........

According to home book he was asked to draw in his drawing book. This he did but had put his coat on the table to do it (it was already in his arm as I took it off to save time). After he done the drawing the teacher then asked him to go and hang the coat up and DS said his coat could stay on the table. Teach told him again to hang it up in the cloakroom when he finished drawing and while he was doing it she would get his phonics tray. Then she asked him what he was drawing and DS said "none of your business" She then told him she wont be spoken to in that way and left him for a "few moments" to think.

What transpired in the "few moments" was a little girl walked up to him and said that Miss said its time to put the books away. DS shouted agressively at her and she became upset. DS was then told he needed time out which he refused.

So then another older teacher was called and DS ran through the hall and hid underneath the chairs. When his actual teach walked towards the chairs DS "slid" a rock towards her (why are there rocks on the floor??) He then went with the old teach for a 5 minute time out. When he came out his actual teach said come with me.......

Now the book stops there but matters got worse he wouldnt follow and was not calm and started throwing pencils around because he did want to write and they decided he was a complete danger to children and she held him.
DS cannot stand being held and it resulted in the teacher getting two scratches on the hand. She apparently showed him what he had done and he said he didnt care.

Now I asked the TA to take DS outside and had a CHAT with the teach.

Told her I wholeheartedly agree that she shouldnt be spoken to in such a manner and can understand why she needed to point it out. But my concerns were as follows

A) you need to follow the same routine with DS ie he hangs his coat up first.

B) If he is 1 to 1 and did his work solo how come he was in a full class when he cant cope. You broke the routine from the minute he walked in the door as he normally goes to library to work first thing, then play, then another quiet place to read etc.

C) not only totally out of sync, you gave him to many orders at once, draw in busy book, hang up coat, told him off, finish drawing, told him off, then left him. It was obviously a whole class teaching session because you had told all the children to but books away. And he had been left long enough to snap and some poor child.

D)Why cant you CALL ME when he gets to that state or runs away. I have repeatedly asked them to do this because I know what will happen unless he is calmed down.

E) you have told him he needs time out and he refused you then get another teacher who he knows is going to take him into another class full of kids so he ran and hid. AGAIN you had the chance to CALL ME.

F) you expected him to just go from chaos and come back to chaos and start work. By then all hell breaks lose and then you hold him down which he cannot stand. I am terribly sorry you got scratched but now you know what I have repeatedly told you is for real. And there is no way DS will be sorry or apologise when he is in full on meltdown and has been left to work to this state ALL DAY.

Said to her I have been desperately trying to find a signal for DS to tell you he is stressed. Her answer was well the thing is there are 32 children I am teaching so I dont always see the signs. Told her good excuse BUT HE IS SUPPOSED to be 1 to 1!! so how in the hell can he not be noticed. Apart from the fact she has 3 helpers helping her anyway!

Told her instead of punishing TALK/RING ME THEN TALK. Again asked her to please work with ME on this if she wants a reasonably quiet life and walked out.

I do feel sorry for her as her day must have been terrible but I got to stick up for my DS right or wrong. I will talk the wrongs over with him of course as I always do and point out where he was wrong in a situation. But until we can get some sort of help for him to manage things its a hard road.

Anyhow blasted at the docs and that turned out ok. And so the road starts :)

Poor ds, what a hellish day.

So glad the GP listened to you this time, hopefully things will start to move now.

Will come back later if I get chance, but dh has just come down and we haven't seen each other yet today.

Well done for sticking to your guns with both the doc and the teacher.

Poor ds but well done you on getting the referral. You are on your way now really happy for you and if you want any tips for getting the professionals to listen just shout I'm sure between us we have a few to share

Thanks I will! :) And I am going to school on Monday with a view to tackling the HT/SENCO again. Tell her about the referral and ask her about this statement. It might be that the EP assessment is what she is waiting for to send the statement application. They are heading towards this.The EP said a statement can take up to 6 months to happen. Hopefully the pead will have referred him to the right ppl for help in the meantime (I assume that is what a pead does?)

Thank you all for great advice. Without this back up I know I would have lost the plot :o

Depends on the Paed coff33. Ours saw us, took a full history from antenatal onwards, had a chat with ds then said he felt a dx of AS was probable and referred us to the multidisciplinary assessment team. The waiting list for that was ridiculous, but because we already had Ed Psych and Inclusion involvement we were able to be fasttracked via their waiting list initiative, cutting the waiting time down by four months.

In our area its the junior school age plus team that's overloaded and you get seen a lot more quickly if your child is still covered under early years (so basically still in infants).

I think in some areas the Paed may refer to CAMHS, and very rarely, they will decide on a dx themselves, it varies from area to area.

Statements do take a long time to get through, there's an awful lot of paper pushing and then certain amounts of time that the LEA has to respond within. The IPSEA website is definitely worth a read to help you understand the process and timescales.

In the meantime, the school is going to have to come up with some strategies for handling your ds and making him feel safe in their care. I know I harp on about it a lot, but the inclusion team can be invaluable in assessing the class/school environment and advising the school about this sort of thing.

If they just start to handle him as if he does have ASD, while he is awaiting assessment it should really help. As you said, they need to take into consideration his need for order and routine and have an agreed plan of action for a) putting the brakes on before it gets too much for him and b) how they are going to handle the situation if/when it does get past that point. Everyone who deals with him needs to be singing from the same songsheet and they need to make sure they stick to it.

Could you prepare a sort of passport of information about him that will inform them of his likely triggers and calming strategies (such as never pin or hold him down)? They have some templates on the Ispeek website here (scroll down to find the boys passports). He can even help you put some of it together, perhaps as a way of helping him feel more in control of what happens to him at school and more like he's been able to communicate and been heard. It will also prepare him for what's going to happen, so he's not so scared or confused when it does go pear shaped.

My ds has just prepared his passport with his Ed Psych this week. He chose a computer game character theme for his and thoroughly enjoyed helping to fill some of the information and then decorating it.

Moosemama how do I get hold of the inclusion team? Do I have to request this with the school or is it the Education Authority I have to ring. Looked on the IPSEA website but cant see any info on it there (plenty of other great info tho :)) or I might be just missing it. :o