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AS daignosis. Awaiting EP assess. school refuse set up SA & IEP.

62 replies

Oblomov · 16/06/2011 14:32

Diagnosis letter arrived from CAMHS 2 weeks ago. Daignosed ASD, naming Aspergers.So I arranged a meeting with partnership-with-parents ( to support me), senco, head, teacher, and school link worker.
Diagnosis recommneded EP assessemnt. I requested an IQ test as part of that, and although objected school finally agreed.
Pwp asked them to contact outreach. they objected and then agreed. so an asessment will be done by outreach. aswell.
pwp asked school why no SA or IEP and they said no need. said thta ds displays no problems at school. and so refused to set up SA or IEP.
they basically dismiss everything. dismiss the diagnosis. saying "they see no evidence of anything". when asked about why ds was not doing so well acadmically, seeing as he's so bright (although he is doing very well), head said they thought his lack of prediction skills and lack of comprehension was down to "immaturity". so thus, dismissing empathy and theory of mind problems that paed and clinical pyschologist and also the CAMHS diagnosis letter, had highlighted.

So basically, I got nowhere.
PWP said, don't push, lets wait for the EP assessment.
He currently gets no assistance what-so-ever. Nothing. other than 'emotionally literacy on a monday'. He gets NOTHING ELSE.
And many Mn'ers have suggested moving schools.
And applying for a statement.
Both of which I am considering.
I did threaten school with applying for statement. pwp said that LEA woyuld laugh it off, because school haven't even done some of the basics yet.
But in the meantime, waiting for EP assessement and outreach assessment, is there anything I should be doing, in the meantime?

I have basically been discharged from Camhs. I have an appointment with a new paed in sept. I went to the old paed sept last year. he said there was nothing wrong with ds, come back in 12 mths. since then I got myself into CAMHS and now have a diagnosis. So when I meet new peaed, I am hoping that 'something' will begin.

Please advise what I should be doing next.

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scartette · 16/06/2011 22:00

My son recently dx with AS-He 11yrs.He is a mild case but school have been brill.He gets an hour a day with a resource teacher who works with him on his poor handwriting, social skills etc. It one to one for three days, shares her with one other boy on a Thursday and he's in a group of six on Friday when they do a bit of cookery/crafts/trampolining to help fine finger movement,motor skills etc. Your brill.school should really be doing more. You may have to seriously consider moving him,hard as it will be for you.

MrsMagnolia · 17/06/2011 07:41

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Oblomov · 17/06/2011 11:45

No Magnolia, his handwriting is not THAT bad. Just needs a bit of help from the school really. But that seems unforthcoming.
Thanks for your message scartette.
I feel so miserable. Am sitting here having a little weep.
Must go. Phone DVLA to chase up all the other crap thats going on.

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justaboutWILLfinishherthesis · 17/06/2011 14:49

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GeneEyuss · 17/06/2011 15:11

Hi my experience they're all basically ill experienced to deal with children who do are not neurotypical, my 8 yr ds has been under the radar of various professionals and six years on and we don't have an official diagnosis, despite an ADOS placing him within the category of HFA. What i would say from experience is get a parental request for statutory assessment that will draw in all the professionals. Write in to EP department requesting involvement they will have to respond as i have had to do in the past, make the request specific including details of all your concerns.

My ds is 95th percentile on ravens, very able yet has a poor working memory which hinders progress, non-motor visual perception? sequential memory. They will all resist but triy to create paperwork as evidence is neccesary if you have to challenge decisions. I would also be prepared to get independant assessments done. you seem to have good support which helps. good luck

mariamagdalena · 17/06/2011 16:34

I read your posts and had this weird almost deja vu feeling that I must have typed some bits of them myself. My experience of faith schools (personally and from others) is that this situation seems a bit more common than in lea run schools. Perhaps they're just a little more used to being autonomous, perhaps it's because they are so used to being hailed as outstanding, perhaps they don't really believe in all these new diagnoses of children who seem perfectly all right and should be left the way God made them. I just don't know. If you do find a technique that works, please do post it here and message me with minute detail of how to replicate it!

Oblomov · 17/06/2011 17:31

Thesis, he is 7. Just done Yr 2 SATS.

Maria, the school-link-worker described them as "insular". Thats why they hated it when I bought pwp to the meeting. Camhs said they were very difficult. very difficult to get info out of. but when I went to the meeting, they were telling me that the 2 ladies who came to assess ds, from camhs, told them how helpful and fab they were. and that they were waiting for a report from camhs which would confirm how fan-dabby-dozy they were.
Beggars belief. I seriously think they are deluded. Starchart gave a post , earlier, which summed them up. as if parents who don't know what they are doing are so grateful to them. they don't like to be told what to do. question them and you are screwed before you even begin. So no, I am really sorry, but I have no advice.But once I find anything, and I mean ANYTHING that works, I will find you, and you will be the first to know !!

Gene, thanks for the tips. I will initiate a statement. Rather than let them do it, I am going to do it. And I will write to the EP. I will get her conact details, and I will write and specify my concerns.
I have already contacted outreach myself. and sent them a copy of my diagnosis letter. and told them that i find school obstructive. senco won't like this. But I don't care.
And Gene, you are so right. Moosemama gave me some fab advice on one of my old threads. I wrote a letter and detailed every single thing that had ever happened in diary form. And i now e-mail senco all the time. so paper trail. no problem.

Thanks everyone. I feel a bit better. No more sobbing. Have just poured myself a glass of wine. Haven't had one for ages. Feel better already. Thanks to you all. emotional old twog that I am. Thank you for putting up with me.

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TotalChaos · 17/06/2011 20:05

glad you are feeling a little better, I appreciate the driving issue makes it harder for you to move, agree with indigo though, may be worth looking round the rubbish schools anyway.

btw apparently my DS (also year 2) had a tendence to shout out a bit in class earlier in the year, way teacher resolved it was to have a general circle time focussing on good manners etc, rather than by singling him out or using behaviour charts etc.

justaboutWILLfinishherthesis · 18/06/2011 22:51

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tryingtokeepintune · 18/06/2011 23:27

Oblomov, Star's post about school is what I would have said about my ds's school - except that she phrased it much better. The ht e-mailed me and said that outside agencies (who? the drumming teacher) said they had a good overall communication programme in the school generally and they think they are giving my son an excellent deal - that was a reply to my question why he did not have any of to his statemented provisions re communication for a term.

Re: shouting. My son did that a lot last year. I was told by Autism Support that anxieties around transitions quite often cause that. Have your son been checked for Sensory processing difficulties by the OT? My ds calmed down a lot after the OT came into school and put in a programme which enabled him to get lots of physical movements throughout the day to help him cope with the stress and noise in class.

Also it might be a good idea to check any behaviour charts and reward system to ensure that it is relevant to your ds. My ds's school had as one of his rewards a period of play for the class . Well, unstructured playtime was not something that ds liked so as the class trooped off to play, he would kick someone or do something to ensure that he was the only one who had to remain in class (bliss and quiet for him). School was very perplexed by this... even when I remarked upon the unsuitability of the reward they did not believe me; it took the clinical psychologist to say it in a letter and autism outreach to repeat it before they changed it to a more appropriate.

Agree with applying for statement asap. IPSEA's website might be useful. (Sorry if this has been mentioned already.)

Good luck.

Oblomov · 19/06/2011 09:53

Chaos, you, and others are right. I am going to check out the other schools. They may be supposedly 'bad', but they may be very 'good' for my child. I should not have been so dismissive.
Thesis, thank you. I will set a deadline.
Trying, you are so right, Star put it so well. She is so right and I had no quite clicked on to the reality of the situtaion, re the way they like to run it, be in control. But I sure have now.
We have not seen an OT. We have not seen anyone in school yet. I mean no one has come to see ds, other than the short Camhs assessment. Presumably because school do not think there is a problem, so have not called anyone in.

Oh yes they have called someone in. The SLW. for the paed, a year ago, they reported and told him there was nothing wrong. apparently this is the connors test ? Theirs was polar opposite of mine. so they called in SLW. presumably, what they are actually saying here, is mother has problems, we see none, so it can't be autism, it must be bad paretning. lets call in SLW. correct ? or is that just me being cynical Wink ?

Actually I want to get rid of the SLW. She is a) useless. and too chummy with school/senco particularly. She said at the meeting, that I basically denied her help, as if implying that my parenting was perfect. not quite the case. then she suggests 1-2-3. which I already know about. already use, a little. but is not recommneded for oppositional types AS. And even phelan says it is useful, but once you see thast a child is sn, assessemnt needs to go beyond 1-2-3. As if to suggest that 1-2-3 filters out the crap parenting from the autism. Carp parenting is their take on me, rather than autism.

I don't know if you all think I am deluded. But I am really hoping thta EP assessment and the Outreach assessment, will 'save me'. not quite save me, but do something. In that 'if' they do their job properly, they will point out things school haven't seen. And insist of some sort of practical steps. Outreach and EP and surely not going to agree with school that there are no issues what-so-ever, when they have a diagnosis from camhs, in their hands, which lists the 'contradiction' from school, and still the camhs dr, decided to give diagnosis. Why would an EP/Outreach, agree with school, over camhs ? If they are one ounce professional, they wouldn't , surely. Or is this too my naievity ?

Am I supposed to request OT ? Even though We are waiting for EP assessment ?

I wrote them a 10 page letter. 8 pages of diary of all the things they had done wrong. and some corking comments by Deputy Head and Senco. I am going to update that diary. And keep it up to date. since then senco refused camhs access. must note that. Head said in last meeting that his prediction skills and lack of comprehension, ( not classic AS traits then ??!!) were "immaturity".

I will just keep plugging. Apply for statement. Get the EP done, so hopefully that will back me up. And meanwhile , I will look at other schools.

Ds has just ocme to tell me that a) he has no one to play with last week, becasue one of his friends is on holiday.
And 2) he took money to school, to get some mooshi monster bands. I did not know this. he is in trouble with teacher for this. and the 5 bands that he did have, he lost. he failed to tell me this until later. I can't get any info out of him. He never tells me anything. He never told me he was on a reward chart for 6 weeks, that he was bullied. That he had stolen match attax cards. or that he had stolen mooshi monster cards. both from children in his class. He never tells me anyhting.
God, I despair, sometimes.

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MrsMagnolia · 19/06/2011 15:48

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Oblomov · 19/06/2011 17:18

I will enquire as to OT.
Outreach , for us, is requested by school. To ask for help. But I guess if school insist they are already coping, becasue there are no problems, this could be minimal help.
I wonder whether the outreach you are talking about magnolia, is slightly different ?
I will consider physio, but to be honest I don't think there's much there. Yes hes clumsy, so am I. no fine motor skills problems other than writing. and his writing is not that bad, just the transition to joined up writing that seems to be the problem. he can do laces, ride a bike, use cutlery well. runs wierd and comes last in most sports day, odd, because i am pretty fast. can't do football, because so un-co-ordinated. But he loves it and plays all the time. growing pains, yes, but very rarely.

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tryingtokeepintune · 20/06/2011 12:06

When you see the OT, you might want to ask for your ds to be assessed for sensory issues. Despite my request, school did not ask for one/said there were no sensory issues. I had to call the OT and make the an appointment. A month later she assessed ds as having severe sensory processing difficulties.

Autism Outreach - she makes good suggestions which the school then ignores. She recommended a book for social skills, interacting with small groups etc but school decided not to do it. I bought the book and brought it in so that they can work on it but the book was returned to me as they already had a book on social stories! I had to point out the difference to them. Tbh, although they have my book, I don't know if they are doing anything with it.

Ed Psych - her reports and recommendations became less stream of consciousness once she thought a SENDIST appeal was on the way.

However, all of the work for the LA and in the end, they will back each other.

Al1son · 20/06/2011 12:39

Oblomov this is a battle that it is possible to win. Your DS sounds like he is behaving like the girls with AS who Tony Attwood describes (he acknowledges that some boys behave in this way too) and my girls are both very like this. They show very little in school but their anxiety is off the scale when they get home.

The two things I found most helpful were copying relevant pages from Tony Attwood's books 'Asperger's and Girls' and 'The Complete Guide to Asperger's Syndrome' and handing them to the SENCo. On one occasion I asked the EP to hand them over because I thought that might encourage them to read it.

I also used the home/school diary to explain how DD had reacted to various events in school, how I had managed her response and explained situations to her and how I thought they could manage situations to remove some of the problems she was experiencing.

I also encouraged DD1 to write in the home/school diary herself so they could see that the info was coming direct from her and couldn't blame me for seeing something which wasn't there.

It has been a long hard slog but after a year they are now anticipating the problems themselves and putting appropriate measures in place without me having to ask.

DD2's school are just beginning to get their heads round the fact that just because her behaviour isn't hard to manage doesn't mean she doesn't have any problems. I know there are some who will choose never to see what's in front of their eyes but I will continue to work on those who are willing to listen.

HTH

Oblomov · 21/06/2011 12:29

Sorry for delay in responding. I didn't really know what to say. But I do appreciate your posts though, thesis and Al1son.
HSLW came round to my house yesterday. She said to write Yr2 off and see how things go.
Senco has made the referals to EP and Outreach. She thinks Outreach will be easier (quicker) to get in. She said EP longer. She is meeting EP today. And will be passing over referals, including my ds, to her today. I asked if she was going to give EP diagnosis letter (HSLW advised me to check that this was being done). She said, 'I was going to check with you that it was o.k'. I told her, I wanted it done. I asked for the contact details for EP so that I can contact her myself. Apparently they are very busy, and have over 200 schools to cover. And need to prioritise. So presumably he is not a priority. I asked her if she thought it would thus be Year 3 before he was assessed. And she said yes. I am obviously unhappy with this. But what can I do.

Al1son, obviously we have no home school diary. They refuse one. Becasue there are no problems in school. But the dairy that I complete, as part of noting down their ridiculous service. I shall take your advice. And start my own. Start a new one, noting ds's behaviour. Then present it to them. see what they have to say then.

God, I'm so tried of fighting. I feel so ill diabetically. Sometimes i wonder how much more i can take, before I ??? have a nervous breakdown. Thats a bit melodramatic, I know.

DVLA have asked me to stop calling. The doctor is unable to make a decsion, so is going to confer with a colleague. How long will that take ? apparently there are no time restrictions. I have been unable to drive for 3 weeks now.

Keep on going Obs.

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Ben10isthespawnofthedevil · 21/06/2011 14:26

I've been in to see the EP today for our meeting prior to him assessing DS. It was just a waste of time with him telling us all about statementing, how DS wouldn't qualify due to the changes being made to statements where apparently only children who would qualify for a SS or unit would get one, how as he was only 6 he wouldn't be able to test him properly probably etc etc.

Ob, sounds like you are havign the same problems with us that school and us report a completely different child. He even referred to the list of issues that has been given to the paed as being what every child does Hmm That is why the paed is assessing for ASD then, as it is all completely age appropriate is it Confused

Keep fighting Ob [Ben10strokesObsforehead]

Oblomov · 21/06/2011 15:27

Thanks Ben10, hugs to you.
Honestly, its painfull dealing with such imbecile's, isn't it ?

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justaboutWILLfinishherthesis · 21/06/2011 16:50

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Al1son · 21/06/2011 17:16

Good luck with the diary Oblomov.

I was feeling dreadfully ill because of the stress a few weeks ago. I literally felt sick and physically unwell and could feel the stress overwhelming me as I woke each morning. My GP has given me some Beta-blockers to manage the physical stress symptoms and they have been a godsend. Perhaps you should see your GP and see if there's anything that could take the edge off for you.

StarChartEsq · 22/06/2011 00:33

Apply for a statutory assessment. You don't have to do a lot at first except download the form from the IPSEA website and send it off.

If you do this it will 'trigger' professional input from the EP much faster as they will have to have a say in whether or not they are going to go ahead with an assessment. They will usually prefer to have at least met you.

mariamagdalena · 22/06/2011 09:41

Might it be worth knowing as much as the professionals about hypo-unawarenessand keeping a diary? What's good for asd...

Oblomov · 23/06/2011 19:59

Thanks for last few posts. Have spoken to GP, but nothing can be done. That link that maria did for awareness specifies betablokers as one maof the in culprits. that s bugger al1son, isn't it ? Are you feeling a bit better Al1son. what do you think ground you down so much ? I really need to work on not letting it grind me all down.

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Oblomov · 27/06/2011 09:58

EP just phoned. She will not be assessing him. His needs are not complex enough.
She hasn't had a referal from the school, its just the senco talked to her about ds, and becasue I had asked for contact details of EP, she rang me at home.
She will talk to the STEPS team and they will advise what the school should be implementing. But no one will visit, to see him.
Apparently, the CAMHS Dr, who diagnosed,and suggested the EP assessment, should not have done, becasue 'they don't know how the education system works'.

Gutted.

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Ben10isthespawnofthedevil · 27/06/2011 10:07

:( Time to request statutory assessment methinks. You have tried being patient and listening to them. Enough must be enough......