School- ups and downs part 2

So Friday…
Friday we had a visitor coming. When I talk about school, all my stories start with…. “My friend x and I, well, once…”, she was coming to see us, I haven’t seen her for 5 years (She last saw dinky as a baby).
So when I dropped Dinks at school, I went straight home to have a bath, tidy up and sort out a few things.
10am my phone rings… It’s the school. More than that it is the Muppet. Normally if they are going to exclude Dinky it is the office staff that phone.
The oddest conversation starter ever…
“Dinky is in a room under the table and is refusing to come out. We have a line of children waiting to use the room… What would you do?”
Interesting!
I replied “why did she go into the room?”
She said that it was literacy and Dinky refused to do it, left nurture and ran into the room.
So I told her to try taking the pressure off. Tell her she doesn’t have to do the writing right now, give her a choice of activities she does like and wait for her to calm down. Once she is calm try again, but not too direct.
I got a response of… Ok.
So I was in the middle of hoovering and the phone goes again… It is the muppet again.
She tried my suggestion and Dinky left the room and went to calm down, and by all accounts was calm in the head’s office. I still said they should give her 10 minutes. She said she was phoning to let me know she was ok.

So I finish up, my friend comes, we chat. Then go get dinky.
I don’t know why but it has become the norm to pick dinky up but not be able to take her straight home, as for some reason she has no shoes on. I have tried asking her, apparently she just does.
So we all walk home, and dinky is really good. At home dinky at first was trying to be really calm, but then she started jumping all over her, and has an awesome grip. Within 10 minutes my friend was saying she was dead. Dinky being dinky said “no your not!”.
Before bed time my friend went home.
Dinky then started lining her coins up and then span watching Christmas curious George for the second time in row.
She did so well trying to hold it all in.

School- ups and downs part1

It has been a crazy week.
The TAC was a major let down.
Tuesday I got a new contact book because I hadn’t put the old one in. (I hadn’t put the old one in because Friday they said Dinky’s social skills were improving, I wanted to call bull… But thought better of it. I was annoyed to see the words “followed all instructions” because I knew it wasn’t true. I have very little faith in their ability to ‘fix’ Dinky/ cure PDA in the matter of a few days. So pretty much the same reason I didn’t put the other one back in.
I went in Wednesday morning and I told them I didn’t want the book, not if they were going to tell me things I knew to be false. I told the receptionist that understand nurture likes to be positive but I wasn’t interested unless they were going to be truthful. I asked for Dinky’s nurture targets. Which I was told would be in her book bag that afternoon.
So Wednesday, when I went to pick dinky up she was really not in a good mood. When we eventually got home (which believe me, was not at all fun or easy), there was yet another home contact book. Which was a little more than ridiculous!
They obviously hadn’t listened to “NO contact book”. There was spiel about how she had not exactly done what was asked… Then her targets…

1) to do what is asked
2) to follow short instructions.

Which is setting her up to fail. I was starting to wonder which part of pathological DEMAND AVOIDANCE this school does NOT understand!

Then there was some more rubbish which got my back up.
So I wrote some things, which I shouldn’t have, and used half a bottle of tipex, until I got really annoyed and just ripped the page out.
I then ripped the page out of the other book.

We went in Thursday, well, Thursday was very interesting.
I spoke to the head of nurture. I was pretty annoyed. If you have read my previous posts I’m not exactly impressed with the idea of Dinky being in nurture, which didn’t help matters.
I told her my views on nurture, and that dinky was not suitable. I got pretty annoyed when she started talking about her child’s completely unrelated physical disability which anyone who is able to understand, would understand. Not the same as having a neurological condition that not even all the medical professionals understand.
It got to the point where I actually cried. I think the last few weeks have hit me hard. Dinky has really struggled, and it is hard to watch. I have no idea how we got onto it, but she said I should know it isn’t my fault.
Which is when I told her the truth. I used to think it was my fault, up until I found out about PDA, then it became PDA’s fault, and yet everyone was still trying to blame me, or thought it was me, or just made me feel like a crap parent of a naughty kid. Her being in nurture just went to fuel those thoughts in others.
I was assured that dinky wasn’t seen that way by the school and it is literally a case of that this is the best resource they have to meet her needs, it’s not perfect, nor a long term solution, but as a team they believed it was the best they could offer given that she wasn’t coping in the classroom.
It was nice to finally talk to someone who made sense. Even if she was a bit of a muppet for comparing a completely understood condition, to one which is pretty much misunderstood by many professionals in the UK and 99% of professionals overseas (sorry to the oz mum… I wish I could send Dinky’s new paed to OZ).

I had a really weird appointment with my support worker… Who finally gets the idea of my life, having known me almost a year now, and week by week something altogether annoying happens and it generally includes dealing with an unusually large amount of muppets compared with what would seem in the realms of probability.
That among other things.

I went shopping, got home, I had barely finished putting the shopping away and my phone rang. It was the school.

Dinky was being excluded for the afternoon. I went done and spoke to the head and he head of nurture. Apparently dinky was supposed to be doing writing, she refused, went under the table, tried to break the pencil, drew on the underside of the table, on the floor then kicked out at her lovely 1:1 for trying to take the pencil.
Here were a few other little things. The head of nurture said it was as if she had to have a physical release. Part of me was itching to say “that would be the need for sensory release, or a way of releasing her anxiety in a physical way”.
So I had to take her home, it was also advisable to clear my afternoon for today and there was thoughts about the possibility of a part time timetable. As they brought her out she ran off. We went in search of dinky around the school.
We found her on the playground. I had to work hard against the idiotic ramblings of other teachers to get her to come home.
She was not happy.

I shall write about today tomorrow… Until then….

November TAC disaster

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The TAC…

Well, it was interesting….
We went over the points from the last TAC, which was boring really, until we got to the point where the school said Dinky now has speech and language sessions in school which started last week. We also talked about how disappointed I was in the NHS speech and language report. Apparently there is supposed to be a meeting between myself, school and the SALT.
We talked about assemblies and after Dinky’s spectacular escape into sure start how I had agreed the school’s decision to stop her from going to them anymore.
The family link worker talked about how strategies she had put into place were working, and if I even tried to mention how things are starting to fall apart I was met with “it isn’t always going to be perfect” and “there will still be days..” TRY WEEKS! Again, I’m not allowed to have much of a voice where the FLW is involved. She said that she would be ceasing the sessions after Christmas. I’m not exactly sorry she is going, she isn’t much help.
I did say that mornings were much more difficult at the moment,and explained that one say I have audio of her refusing to walk and come to school, and another day she ran out of the school office and straight across the road, with the 1:1 chasing after her.
The boss lady asked what the triggers were… I said that I didn’t know what they were for the refusal as she just doesn’t like school, and the second time she was asked to put her smurfs away, or give them to me and she ran off.
Then onto the whole CAMHS thing where I explained that we are still going to be seeing the Paed at the CDC and that CAMHS turning her away was not helpful. She went red and didn’t really know what to say, except that she can bring that up at young peoples planning forum where CAMHS will be in attendance. She just doesn’t listen to me, which is why she didn’t fight, because she didn’t know that dinky was still going to be seen by CDC.
We discussed the PPM, and how that would go, which is the first time that the parent partnership bloke has actually contributed properly to a TAC, which is fine, as it is nice to know he will jump in when necessary. He explained that the PPM will be an explanation of why the statutory assessment was turned down and give the school pointers on how to support her better. I piped up with the fact that we have changes and new information, and if that fails I have sent a wad of evidence for appeal/ tribunal.
Then the SN group leader talked about the trip to chessington at Halloween and the football trip. The first one dinky had run off and hid to calm down. The second she did so well and even managed without her ear defenders for the second half.
This no one seemed to get. How she could need ear defenders for school assemblies yet not need them with a crowd of 27,000 people. I told them that the evening was an utter nightmare, due to her letting it all out at home.
Then onto school… We started off talking about Dinky spending more time in nurture. They said it was because she wasn’t learning and she was disrupting the learning of others. They said she was doing really all in nurture (for all of the 2 full days she was in there last week)…. EXCEPT she was still having trouble doing as asked. Which is funny because that is not what it says in her contact book. They explained that Dinky had thrown something at another child and hurt him which is why she was on top of the pegs in the cloakroom on Friday. Which doesn’t help. I explained that I got her down, and we left… Eventually.
Again the boss asked what the triggers for her behaviour is in school, and the school said…. Wait for it….
She refuses to do work, she won’t do the exercises or things she doesn’t want to do!
We discussed the IEP and went back to nurture as I wanted to know what the plan for nurture was.
Apparently if Dinky wasn’t in nurture then it is possible that she would have been permanently excluded. I said I understood that, but it still wasn’t the right placement for her. I asked if it was because she couldn’t cope in the classroom. Yes, according to the school she can’t cope in the classroom. I said I was unhappy, the school know I don’t want her in there, and they know that that would stop me from socialising as Nurture has a really bad reputation. They all nodded ect. Then the head said that 80% of children who attend nurture are ready to go back within 2 terms. Out of the 20% that aren’t, 15% end up in special education and 5% end up permanently excluded and go to other mainstream schools. I said that sounded about right for what I thought was the case. In my head I was hoping Dinky would be in the 15% and end up in a special school, but not EBD.
Apparently the social communication team couldn’t come out last week so they are coming out tomorrow. I am a little concerned that they will be seeing Dinky in nurture and not in a classroom environment. Apparently the school will let them know what she is like in a classroom environment. Which I said “what about the things you do not pick up on that maybe the social communication team would pick up on.
Then the integrated services lady’s boss chirped in… “What about friends at school”. The school said…. (And I am bloody fuming they have only just grasped this!) “she doesn’t really have any, she finds socialising difficult, and doesn’t have many friends. She tries to control them and they shy away. Dinky usually plays alongside other children.” Now, I know dinky does play with other children but I have also seen her play alongside them when she can’t control them, it is a way for her to be in control of her own game. The SN group leader said that dinky has friends at the group, and I said that for some reason Dinky has always played better with other kids with additional needs. Which apparently is normal.
She then piped up again “well, what are you hoping to get out of this as I can’t justify integrated services lady carrying on”
I said that would make things a bit difficult in the TACs as we would have no lead professional, that we couldn’t pass it on to the school and it would have to be someone with the power, ability and time to fulfil the role. Which no one else could do. (SN group leader doesn’t have the authority to bang on doors as she would be seen as ‘just a respite provider’). I said once they found someone to fulfil the role …fine.” I was annoyed. As much as I said that I should fire her anyway there is no way I could have done for the very reason I told her boss.
I said I was hoping that Dinky would have a diagnosis, be settled in a education and be learning.
I was told by the boss lady that I shouldn’t wait for a diagnosis and a diagnosis mint not come.
By this point I was fuming, but trying to hold it in…. I said that I don’t see why she shouldn’t get a diagnosis, everything said so far even today about Dinky says PDA, she won’t do the learning exercises, “what triggers behaviours”… ‘Refusing to work, Being asked to do things she doesn’t want to do’, being controlling of other children, ect.
She said what if she doesn’t get a diagnosis?
I said I would find that odd as she has a provisional diagnosis, and I don’t see why that won’t go to a full one, and I really don’t see how she won’t get a diagnosis of anything. She is not a typically developing child, typical 5 year olds are not generally excluded from school, do not refuse to work, have friends at school, play nicely, and so on.
So I revised my outcomes, I said “fine, if you don’t think she will get a diagnosis, then I change my answer to for her to be happy and settled in a learning environment be that a special school, a unit within a school or a mainstream school.
She asked the school for their goals
‘To be settled and learning and fulfilling her potential’. I had to laugh as it wouldn’t happen at this school!

I don’t know how we got back onto the lead professional subject, but I did say that the school can’t do it as we do not have a good relationship. She asked why. I told her it started when Dinky started as it took so long to her anything done. She asked what would make it better. I said for Dinky to be supported better, for the school to listen and not make me feel crazy. I also said that apart from the headteacher not to be made to feel Dinky’s behaviour is my fault. Like the wording on the behaviour plan. “Chooses aggressive and violent behaviour”, I said Dinky doesn’t choose this any more than an asthmatic chooses to have an asthma attack. It was then the group leader backed me up. She said that dinky definitely does not choose her behaviour. That she can see it bubbling up inside of Dinky and that is when she ran off at chessington. She said there are some kids in her group that can choose to behave that way sometimes, but dinky tries so hard not to. Which actually made me cry and I said she is misunderstood, I feel no one understands her like I do, or the group leader does. That is why I get so frustrated, and I will put my hands up, I am not perfect and I do say some things in the heat of the moment, but that is because I see Dinky struggling and there is nothing I can do about it. I can’t be in school to lower her anxieties. I have to deal with it when she comes home. She tries so hard to keep it all in and it upsets me.
So the boss lady said that maybe the county autism behaviour person could advise on how to reduce Dinky’s anxieties. I said YES, the reason I wanted the CAF in the first place was to get support for us.
She asked if I had any other support. I said no, my dad sometimes, and the SN group 3 hours a month but that is it. I have had someone out to look at providing a paid 1:1 on a reduced rate for Dinky, but how long it will take… How long is a piece of string? The same with the other short breaks providers. We are on two lists and had someone from one place to take her to a mainstream group after school for 12-15 weeks and then pull back, but at the moment Dinky finds after school very difficult and there is no way she could do a mainstream class. It is hard enough with special swimming. I was asked if she was still 1:1… I said yes.
She said she didn’t know how I expected the school to treat her like she had PDA without a diagnosis. Parent partnership said that I have obviously done a lot of research and given it a lot of thought, and handed the school strategies. I said there are PDA strategies that need funding and there are some that don’t. I haven’t asked for funded strategies, I have just asked for what would be considered as reasonable adjustments under school action and school action plus. I have tried to be reasonable with my requests. I said to the school that if they don’t want her running Around then they might want to use some of them, and most of it is just talking to her in a different way. We discussed a teacher in early years who was really good at it with Dinky.
She said why use the strategies without a diagnosis, I said you have to use what works. If it is free and it works… What is the problem?
At one point the head asked if dinky still needed wrist reins… And the SN group leader said “yes!” Like it was the most ridiculous question she could have asked.

There was more to it, but I can’t remember it all, to be honest I don’t want to.

The main thing is the SENCO showed up and therefore the head didn’t say anything wholly stupid, the reins question was the dumbest!
It looks like I’m on my own. I was really upset when I first got back from the school and in the afternoon, but the more I think about it… Neither of them did very much anyway. Like I said earlier the FLW I am not bothered about, it would be nice not to have to tell someone their own job! But I’m annoyed that we have no lead professional, not that she did anything. I have found everything on my own. I have done everything myself. She has organised the TAC meetings, but she hasn’t actually done anything helpful. The higher up lady has at my request.

I’m wondering if I should ask to be my own lead professional!

The whole thing is bloody ridiculous. Now I have thought about it I have to go BACK to the school and say… Well the IEP and behaviour plan are invalid for the next 2 terms as you won’t put her back into the classroom… So what are her targets, and where is the behaviour plan for nurture.

I still do not agree with it at all! Part of me thinks it is worth getting her to be permanently excluded and going to the LA and saying “NOW WHAT?”
But I don’t want to do that to her… She is 5.

Round and round we go!

Preparing for the TAC…

I know I said I wouldn’t post this weekend, but for the last 45 minutes I have been sitting here looking at the screen trying to formalize my thoughts.

Dinky being in nurture is very difficult to figure out.

At the beginning of this school year Dinky was in nurture in the afternoons. The muppet, being the muppet said to look up nurture groups on the internet. What stupid advice to give someone! These were the 2 paragraphs I commented on the last time I read up on the Boxall profile.

Boxall brought into school a different way of looking at the

behaviour that was getting in the way of the child’s progress.

She focused on children’s early development, on their selfconcept,

on the attitudes they had absorbed and brought

with them into school. She understood the difficulties

presented by most of these children as the outcome of

impoverished early nurturing. Lacking an adequate

experience of being cherished and attended to, for whatever

reason, they were not able to make trusting relationships

with adults or to respond appropriately to other children.

They were unready to meet the social and intellectual

demands of school life, and so failed.

and

Why is the profile so relevant today?

It is widely agreed that children with social, emotional and

behavioural difficulties (SEBD) are the biggest challenge to the

effective running of schools. These are children who do not

respond to teachers’ best efforts, they fail to learn, they can

leave teachers frustrated, quite often resentful and with their

professional confidence undermined. They also spoil the

atmosphere for the rest of the class, consuming the teacher’s

time and energy, diverting it away from children who could use

it so much better.

I was INCENSED!

This is my mother… not me. It rocked me to the core. It also shows a complete lack of understanding and a level of unprofessionalism only ever accepted in the teaching profession when it comes to kids with SEBD. The thing is who is deciding which kids have SEBD? Educational psychologists? no… SENCO’s, Muppet Head teachers and teachers. Who undoubtedly are educated, but they are not experts in child psychology/ educational psychology. They are given powers to decide what constitutes as SEBD, and through the Boxall profile are given licence to ASSUME that a child has a poor home life.

The things I have found today are just as disgusting

  • Confronted with a child whose anxiety-provoking behaviour seems to make no sense, the Profile is where you start. It gives you insights and suggests points of entry into the child’s world:  writes a teacher with a class of 6-year olds.

  • It is very easy to use, quick and constructive. It is only too easy for teachers to start labelling children as aggressive or psychopathic. The Profile makes people think about what lies behind the behaviour: writes the Head of Education in a residential special school for children with serious emotional and behavioural difficulties.

The thing is the Boxall profile doesn’t actually give concrete insight into the childs behaviour. It tells them what they already know. that the child is not coping. They then decide whether it is along the lines of attachment, if it isn’t, they just slap a label of SEBD on them and then assume it is also due to the home environment. It is too easy for teachers to go labelling children as aggressive or psychopathic, and it is just as easy for them to assume the parent is to blame.

If you try and use those paragraphs to sum up Dinky, then it becomes even worse.

 

The Muppet said she didn’t think I was a bad parent, so why is she back in nurture? Apparently to see how she fairs in a different learning environment. Which I can see the merit of, but will anyone else see that? See that her behaviour is not because I have turned into my mother, or because I have failed to provide her with the early nurturing she needed, but because she cant cope with the large classroom and the demands that come with it. I very much doubt it. I doubt anyone would see autism in Dinky, because most people are ignorant to just how wide the spectrum is, or how each person with autism is different and struggle with different things in different ways.

I don’t normally cry but I am so upset at the general way Dinky is let down and how indifferent everyone seems to her outcomes.

I think I might have to do some firing on Monday in the TAC.

We don’t need the family link worker who hasn’t been supportive, if anything I have had to teach her over and over again as she hasn’t got a clue about pre or post diagnosis support, or what is available for what age. When she came round with the integrated services lady, I was annoyed that they could both just sit there in MY house and have a private discussion. The family link worker already said she doesn’t know why she is involved with Dinky anymore as there is nothing she can do. Fine.. goodbye!

The integrated services lady’s boss will be there. I will bring up how she doesn’t seem to want to know until a week before the TAC and then doesn’t include me in anything. Then says nothing as CAMHS pass Dinky by, even though I TOLD her that CAMHS are the only ones who can diagnose and that she is staying with the paediatrician who can do the developmental tests, the CDC just needed their input. But she didn’t fight. I don’t have time for half hearted, nor does Dinky, not when she is getting only getting 3 hours support a month from her special needs group, and the school seem to do what ever they feel like

So being a lead professional and a family link worker down, I don’t know how this is going to go.

I need to mention the Nurture group and ask what the plan is and then object on the basis that she doesn’t have attachment or SEBD. If they fight me I have half a mind to take her out of the school there and then.

other than that we are just going round in circles.

I don’t now what to do.

The school will not change.

I have reports coming from the swim teachers, and I think I will have to say again…

I said in april dinky has PDA, we now have a provisional diagnosis. I said in July that dinky would find year 1 harder- and she is. I said in September that she wouldn’t cope with the demands and her behaviour would get worse- it has. I said I October that she may seem settled now, but it wont last- I was right… When will they listen?

They said she was on target academically- they were wrong. they said she had attachment disorder- they were wrong. They said they could fix her- they were wrong. They said she was more settled- they were wrong.

Why wont they listen?

I really do not know how I can be any clearer!

DINKY HAS PDA… SHE HAS DIFFICULTIES WITH DEMANDS, HAS SENSORY ISSUES, AND ISSUES WITH SOCIALISING (ALONG WITH OTHER AUTISM SPECTRUM TRAITS).

Should I get a banner made?

 

I guess at the moment I am going to be prone to utter disbelief , anger and tears.