School are SO sure of how wrong I am, in my ASD concerns about DS

[Babieseverywhere]

Sigh, two more emails from the Senco prior to the Tuesday assessment from ASD Outreach person, who is going to the school to assess DS.

First email said she had been in touch with the behavioural people so they can act the moment they can ( i.e. when the ASD outreach person does not take him onto caseload on Tuesday).

Second email sending information about a local Triple P parenting course that the behavioural team think would be very good for my husband and I to attend.

I understand she is trying to get the help for us that she thinks DS needs and sadly I agree that the Outreach team won't see DS difficulties between Senco telling them there is nothing to worry about and DS exception masking abilities at school.

But I am so sad that she didn't wait until AFTER the Tuesday assessment, couldn't the school just pretend to share my concerns until then, instead of rubbing my nose into how wrong I am ahead of time ? :(

I am also so angry about the parenting course suggestion. I knew it would come up at some point and/ have already enrolled on online Triple P course to prempt this requirement. But I expected the request to come from the comm paed who didn't know me and my family. How can the Senco think I need a parenting course when she sees my oldest two girls behave so beautifully at school on a daily basis.

PS. I am still awaiting salt, hearing and a Comm Paed appointments, so if things go as I suspect they will on Tuesday, I will be fighting on to see if anyone can see what I see in DS.

Ironically another mother at our school, asked me if I had considered looking at getting my DS assessed (her DS is further on the dx route and the school are supporting her) she said our children are like ''peas in a pod" behaviour wise when my DS went to hers for a play date. The only differences her child is rougher at school, whereas my child internalises everything and then comes home and lets it all out !

DS2s autism outreach report by an LA specialist teacher is beyond bad - parent views are wildly distorted - she concludes that, please god, don't give any support (he is undergoing SA)

Don't pin your hopes on any report of the LA/NHS.

Can you email the outreach teacher and say the SENCO has shared the emails with you. Say you are disappointed the SENCO appears to be prejudging the outcome of the ASD teacher's assessment before it has taken place and you hope the teacher will approach the assessment with an open mind. You can also say that while do you not believe parenting is the cause of DS difficulties you have already enrolled on the Triple P as you will explore any option to help your son. You can say the ASD teacher has your permission to observe your other children (who have no behavioural problems) and discuss their behaviour with their teachers if that would help her in her assessment. That way you have flagged up your issues and made it clear the ASD teacher needs to come up with more than a half arsed echoing of SENCO.

I was thinking of seeing if I could have a brief chat with the outreach person tomorrow, if she is free. If I can get an email, I was hoping to email her the behavioural diary I am writting for my DS. Think I have 30 pages of diary entries covering 3 months.

I love the suggestions to ask her to chat/observe my other children at the school.

I will try....This lady does have a good rep, so she might be able to see past the schools opinion.

It is so hard when everyone is telling you that you are wrong.

Dd2's school were the same - not seeing anything, even though I was regularly pointing out issues and concerns.

Dd2 was dx'd with AS earlier this year, when we pushed for a private observation.

Is going private an option? You shouldn't have to, but ime, there is less likelihood of being prejudiced by school opinion.

What is the difference between ASD Outreach and the Behavioural Team anyway. I'd suspect less than you'd think.

(Although perhaps the behavioural team will focus more on everything the parents are doing wrong - I would still expect them to be giving the schools strategies).

The strategies that the school was given for ASD BY the ASD team were so inappropriate, generic and made up a 7 year old could have given them.

I'm sorry. I don't want to give you no hope but forget about the school thing and just focus on getting the diagnosis that most fits and works for your ds. The Triple P thing probably isn't too bad to tick off and as parenting courses go is one of the least awful.

Going private is not an option at the moment, unless things get worse on the school refusal front again. ATM he objects to getting dressed, shouts and is tricky to get out the door but the last week, he has been walking to school...long may it last :)

But this better approach to the school run, I feel is linked to the new attitude from the teachers whilst awaiting his assessment. They have been more patient with him and more encouraging. He is getting a treat when he enters the school, as a reward for a good walk. I am very worried these extras ( also visual timetable and now and next cards) mght be taken away after Tuesdays assessment and this might trigger bad school runs again.

From what I have picked up from the Senco, if DS was picked up for the caseload of ASD outreach people on Tuesday , the school would believe me and the Outreach people would help the school help DS and it wouldn't be anything to do with my DH or I.

The Senco said of the behavioural people, they are really nice and you will find them very helpful. They look at the school first, but we are doing nothing wrong here. Then they will come to your house and help you with your problems. I am afraid I spluttered a bit and said with respect, DS behaviour was definately triggered by school, as he was never as distressed and angry on weekends and school holidays, therefore it is something about the school day which triggers him.

The Senco and school do not believe this, it is much easier to blame me.

Hey ho, if this is what I need to do , to get help for my son, I will plaster on a smile and do it.

I feel for you, we've literally had professionals at our house 2-3 times a week for two years now and I hate it.

In my experience the difference between the Behavioural team and the ASD team really is nothing, here they work out of the same office. In fact, the specialist teacher from the behavioural team was much more useful in giving us strategies than the ASD one has been. She was a lot more strident with school too, and I never got the impression she thought it was our fault, even though DS is our eldest.

School suggested a parenting course for us too, and I was livid about that. I think that's a massive insult when you are struggling with possible issues.

To be fair ASD outreach in my old LA were pretty good. Shame the schools ignored their advice . . . . .

Finish the online PP course & then demand to be put on the NAS Help course - it at least gives you an insight into how the state sector views autism & teaches you their lingo iyswim. The good thing about the NAS course is that someone from school has to go along too.

Would they let me on a specialist course without having a child with a dx ?

Observations done. DS says no one talked to him.

Caught Senco who told me she has been far too busy to find out what happened to DS'S observation this morning.

So I spent all day worrying for no reason...Joy.

Try and track Senco or teacher down tomorrow.

Thank you. I will have a look and see what courses are running locally.

Your story is very similar to mine a few years back.

We had a decent Autism Outreach team too, but all their excellent advice was ignored, even after the dx. Ds was torn apart and it was all school's doing - they had no idea how to help and no intention of finding out. Ds was famously described by his HT as "the most violent child with Asperger's I've ever known" yet still didn't think it warranted additional support or statutory assessment.

In my LA there was a difference between Autism Outreach and Behaviour Support, mainly that the latter was for 'difficult' children without any diagnosed condition (essentially, 'the naughty boys' (the BS woman actually described her clients as such during one meeting ). BS conducted a brief assessment on ds but there was no intervention as they didn't think he needed it. Like you, several assessments ds had were scuppered by school staff emphasising how he wasn't a problem and doing well (not true).

The NAS Help and Help2 courses are excellent so do see if you can find some locally. They don't seem to be as available as they used to be (I remember them coming to my region every six months) but I do have copies of most of their seminar notes if you'd like me to email them to you. PM if you do.

Thanks Bacon will PM you tomorrow :)

I am about to type up a very long post, well maybe it will be fairly short...the end point is I have a glass of hick

Right, here I go.

Yesterday morning assessment.
Yesterday Afternoon School Trip
Yesterday School Pick up, massive meltdown both in playground and in school hall.

Today Really terrible school run. I had sent my 7yo DD1 up ahead, a friend past me in the opposite direction and saw how badly things were going and volunteered to take baby DD3 in her pram (with my door keys and phone on it) I thrust the pram at her.
Dragged DS kicking and shouting into school hall. One office member took DD2 into nursery and another office member went to get someone to take DS off the sofa to his classroom.

Went to find friend and DD3 in her pram and just cried a lot, very upset in the morning school run. Friend took me out shopping.

Senco rang me in the middle of shopping and told me the following.

1. Assesor saw nothing, he is a normal boy
2. Accessment took place watching DS with the teacher in a small group. I.e. the time he performs best and masks perfectly. No time in the playgound as I requested.
3. Repeated about parenting course.
4. Tells me the behavioural lady will be arranging home visit to 'sort out my problems' So not even looking at school then :(

I was a bit rude. I pointed out that of course the assessor saw nothing in a school classroom, as the Senco can't see anything either.

Senco said there was nothing to see.

I said that on average children like my DS get a dx around 11 years old, so I was fully expecting to wait that long until his difficulties become clearer

No response to that bit.

She finished that saying they are going to give DS an IEP for the transition to Year Two.

Well, I have no idea what an IEP is yet to google, but even a blind bat would notice the massive breakdowns he has in response to change...so normal for a 6 year old

School pick up my normal kid come out ten minutes after all the other children, with the teacher. He is dragging his bags and crying. Teacher is telling him not to be silly and he hasn't lost Golden time. He looks at the sky, floor . She tells him to look at her. He puts his jumper over his eyes. She repeats that he isn't losing golden time.

He is crying, I hate school. (He finally told the teacher !)
Teachers replies no, you don't (Well, just deny his feelings, why don't you)
I took over and hugged him, these people, do not deserve my DS, he is too good for them.

Fuckers !

So I cried another river, his evening I went down to bother the local charity people and the woman running it, said she was surprised in the outcome, as it was very clear he had ASD traits. Not that DS was with me. He refused, ringing and threw off his shoes, so I went on my own, just for support.

I could of kissed her, the first person that saw anything beyond me. She did repeat that she can't dx anyone etc etc.

So I am now, pissed off and have a lovely and daydreaming about feeding the bloody dx I WILL get one day to the bloody Senco....but of course I won't really do that.

Onwards and upwards. Must remember to buy lovely friend a crate of wine, she deserves it after looking after me today.

Who was the 'assessor' and wtf were they assessing?

babies Stop firing arrows out randomly in the hope that they'll find the target. Focus on the Developmental Paediatrician route, collect all of your arrows and fire them ALL that way.

You are learning the hard way that the system is poorly designed. You're seeing first hand that the support and services you'd always believed to be in place, just aren't, and worse, rather than admit that you are blamed. This is NORMAL. Not right. Not fair. Not really believable actually which is why it has gone on for so long and continues to do so.

Forget school. Get the diagnosis from someone who can give it, and if you find they can't, get referred to someone who specialises in more complex cases.

Is there any way you could afford an independent EP, because if you can I know a superb one who knows EXACTLY what to look for in schools though he's so blunt you'll cry with both the horror and the relief.

You are so right, Star.

I was been lazy, I just wanted the easy route to work. ..Do you want to know the punchline. ...Our school is so renowned for supporting children with additional needs. ..They have funding to build a specialised ASD unit at our school...fucking ironic.

How much does a specialised EP cost ?

Assessor was specialised teacher from local special needs school.

Apparently if problems are not present at school it can not be ASD....

Did find out from parent at support group , that The Comm Paed I will be seeing in September is very good. Let's hope so. As I have had my share of idiots.

Looking forward to behaviourist visit. Nice lady who runs support group will hold my hand. As I hate strangers in my house and I will be very nice and let make her read DS behavioural diary all 40 pages of it and then she can tell me the golden rule to make him go to school...looking forward to her suggestions. ..I KNOW whatever she suggests I have tried.

Quasi-qualified in ASD then. I doubt she saw nothing though, but probably everything she saw was explained by poor parenting in her brief and she couldn't refute it.

I'll PM you the EP. TBH though because of the cost, you'd be better waiting for a time when his report can actually make a difference. Until you are 'in the system' it will just be ignored.

Do you know what really hurts me....even if I get a dx will these fuckers care...

Take the behavioural person at face value and expect her to solve all your problems.

Thank her for coming and every time she makes a suggestion say 'I'm so glad you said that, because that was what I was doing despite no results. If I try again, what could the school be doing to help make it work at their end?'

Good. Good. They probably won't care. Your dx is the key to the bottom of the mountain you'll have to climb, not an elevator to the top.