The school talk to me!

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It has been a testing week, with the school.

To recap

Friday last week: I was told that dinky was playing games in the staff room 1:1 in the mornings, and asked for someone to phone and tell me what is going on. No one did

Monday: I asked for someone to call me to tell me what was going on. No one did.

Tuesday: I asked someone to call me, no one did. I went to the school at 1pm and asked for someone to explain why dinky was in the staff room playing games. No one was able to tell me, so I took her home, and said she will come back when someone calls me to tell me what is going on.

Wednesday: no call – emailed MP and governors.

Thursday: no call

This morning: phoned school and told them I had contacted the governors, and if I don’t get a call back to have a meeting with the school today, I will be taking it further as they are failing in their duty of care.

I got a call back from the office inviting me to see enlightened deputy and work-shy SENCO at 2pm.

I get to the school- dinky was with my dad- and I wait for the deputy. As I’m waiting the Muppet walks in and says hello to the office staff, and then to me. I begrudgingly say hello back.

The deputy came out to meet me. I was determined to not get angry, and only go with what Dinky NEEDS.
We discuss my can of red bull, which was actually only the second one of the day which is extremely good for me as I go through around 4 cans a day and haven’t had anymore.
Apparently the SENCO was going to make notes and comment here and there, and the deputy was going to talk to me.
She asked if I wanted to start seeing as I asked for the meeting.
I told her that I wanted to discuss Dinky’s education. She asked how dinky had been at home for the last few days.
I said she had actually been really good. She has been calm happy and even done some writing!
I told her how I found out about the change, and how disappointed I was that I had to go to such great lengths and STILL no-one would talk to me. Dinky was unhappy about the change, she doesn’t tend to tell me things about school but she was unhappy enough to tell me about it, so it must have thrown her. I couldn’t explain it to her, prepare her or reassure her because I didn’t actually know about the change and couldn’t help. Which of course didn’t help her.

The SENCO said that she would like to point out that The Muppet was available twice this week, but I was the one that declined. I very politely said

yes, I am aware of that. I am not being childish, but I have very good reason to be angry with her and this conversation needed to be focused on Dinky, not regarding an isolated incident. I have made my feelings regarding this quite clear to the office staff, and all the professionals I have spoken to regarding this issue agree that I have a very good reason to feel the way I do. I am not angry at the school. This is about Dinky and her education, which is the most important thing. I can’t believe that there was NO point in the last 5 days that not a SINGLE other member of senior leadership team could not have contacted me regarding this issue, ESPECIALLY when I took her home.

I was not expecting this

I completely take on board your points, and there is NO excuse as to why we didn’t contact you or discuss this with you at the time. Your points about reassuring and preparing dinky, are valid ones.

I pointed out that while most parents do not need to know very much, but that is because their kids are doing what they are meant to, sitting in a classroom with 29 other kids and learning the things with their peers. Dinky is not however one of these children. I heard she was playing games with a 1:1 in the mornings and it didn’t sound right. Surely as her parent I deserve to know how things are going with her education.

Again the deputy apologised and said that again I had a very valid point, and that in future they would talk to me about changes to her provision. I told them if they don’t have time, I would be happy to receive a note home, just so I can help to prepare her for the changes.

They both agreed that this was acceptable.

They said the plan was to have this 1:1 to get to know dinky. Have her for an hour in the mornings and then go to do choosing in the nurture room, back to the 1:1 for a short while after break, nurture for a small period before lunch, and then back to nurture for practical learning and social skills through games.
Initially, the 1:1 would be getting to know her and possibly doing learning through games in the second session. The learning will be taken slowly so the 1:1 can learn to identify her triggers and gauge anxiety.
Choice based learning will be brought in slowly in order not to make too many changes at once.

It didn’t sound as bad as I thought. And in truth sounds like a decent enough plan. It could work for a few months before I get her moved schools. True she probably won’t learn too much, but she won’t learn much anyway given the school have NO IDEA what they are actually doing, and dinky finds it hard anyway.

Dinky finds phonics mornings hard. Which I am not surprised at. Basically the whole school splits off into small groups and spread round the entire school. We had a TAC before just as it was ending and there were literally small groups of children EVERYWHERE. In the corridors, in the staff room, senior leadership offices, halls, library, studio, everywhere! Dinky has a habit of disturbing the nearest group of children to get out of doing her task.

I offered for dinky to go in later. It isn’t fair on the other kids, and I know how disruptive she can be, so dinky will start 30 minutes later.

We discussed the reports a very small amount as when I brought them up the SENCO kept changing the subject. She was trying to get out of admitting she was WRONG! Although did admit that the ed psych report was spot on, despite the deputy saying that the reports are only a snapshot of what goes on.

At some point I did discuss the misunderstanding the school has on the leaving school issue, I told them that I wasn’t perfect, that I sometimes didn’t put all the pieces together, but it seems that it is not just the transition to come home, but the demands that she needs to get through to get home.
I turn up and immediately have to try and get her to put her shoes on, her coat on, and for her to walk home.
When I put her shoes, coat and book bag in my rucksack and agreed to carry her to the bus stop, she left fine. The demands were gone.

Dinky will be back again on Monday. The deputy has arranged to hold a meeting next Friday to discuss how next week goes. She also said it was a very positive meeting. (If I’m honest I think they thought I was going to be a royal PITA, I probably might have been if I wasn’t so bloody tired! ūüėČ kidding)

I have probably left bits out but that it what happened.

I also got a call from the social worker who is going into school to see a dinky on Monday and then coming here at 1.30pm. Luckily I have the SN group leader coming out to join me at the meeting, to reiterate that they have no concerns, and that the school have been entirely unhelpful with anything and frequently misunderstand Dinky.

So all in all another stressful week.

My dad commented after dinky went to bed, that he is amazed how I haven’t cracked under the pressure, I haven’t gone back to smoking, and I haven’t cracked open a bottle of anything. While maintaining a healthier diet.

Sure because money issues are really ANOTHER headache I need! Not! Smoking is now ridiculously expensive as is alcohol (well the decent stuff anyway, when I do have a tipple, I’m a sprits girl! ). Plus alcohol also leads to feeling horrid and then morning hangovers.

I love my dad, but he does say the oddest things!

Have a good weekend! I might post again Sunday, but tomorrow I’m having a film night!

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The Brilliant Educational Psychologist report!

I can not begin to describe the feeling of having a document written by someone who has a deep knowledge of PDA, and their understanding of your child when they are not in your presence!

I must admit I laughed through the first 6 pages, and then loved the summary of SEN on page 7 and the full 2 and a half pages of PDA and ASD strategies to be implemented by the ‘educational facility’.

Here are some of the best bits in the opening pages, and clear PDA behaviours. (all are direct quotes apart from Dinky’s name change)

  • Her behaviour was, however, very challenging and controlling.
  • Lovely temperament at times, and generally has a good relationship with staff
  • appeared cheerful and chatty during my visit, even during incidents when she was not complying
  • presentation is variable and behaviour unpredictable, with staff reporting that most strategies to support her ability to comply work on some days, but not on others.
  • Dinky rarely follows a direct instruction, and, on the rare occasion that staff feel they can do nothing other than say ‘no’ to one of her demands, she can very quickly become violent, throw things, damage property, or attempt to leave the school grounds.
  • staff make great efforts to negotiate with her, to accommodate her preferences, or to de escalate.
  • Ok this bit made me chuckle! (reluctance to restrain)¬†means¬†staff must go to great lengths to distract Dinky when she runs off (eg Staff have climbed up the climbing frame to divert her attention when she is trying to get over the school fence) Brilliant!
  • Much of Dinky’s school day can be spent by staff waiting for her to comply, or trying to entice her elsewhere.
  • Regularly runs out of the school building, I understand she is also often reluctant to leave school at the end of the school day. It is likely that she finds transitions in general quite stressful, and she responds poorly to changes in routine.
  • Again brilliant! (dinky was asked to show her around) telling me that she could show me the way. However, during a short moment (less than 10 seconds) in which an adult sought my attention at this point, Dinky had left the classroom and could not be seen down the corridors. Dinky was then found on the playground.
  • was later able to play with me for a short while, on her own terms in a more open-plan area, though was distractible, and controlling, and politely declined to participate in any other activities that I had brought with me.
  • Dinky demonstrated that she could replicate social niceties, and appropriate social behaviours.
  • Was calmed by an adult during my visit when in tears because her hands were cold from having refused to come in from the playground.
  • Dinky feels at times ‘torn’ between her desire for belonging and approval, and her need to be in control
  • She could only play a game with me if she heavily cheated throughout
  • Dinky appeared to transgress boundaries during my visit, and consistently took steps to exert control over her environment.

(Some demand avoidance strategies)

  • Dinky gently placed her hand on the adults arm and said “you can ask [another child] that”
  • she usually tried to convert activities in which she was being ‘tested’ to a situation in which she would be testing others.
  • directed adults on several occasions as to what they ‘should’ be doing
  • often seemingly cheerfully resist adult interventions on her play and work
  • saying “sorry, no can do!”
  • negotiations
  • retreated into fantasy
  • “my boss needs me to do some work”
  • Ignored other attempts to get her to stop rocking on her chair and deflected these requests by telling staff that she could not as¬†she was on a ship
  • When Dinky was educated in mainstream classroom, she would hide under tables, tip up chairs, and escalate her behaviour for attention when she did not want to complete her classwork
  • changing the subject, chattering and interupting

(The report continues)

  • At times when she did comply with an adults suggestions during my observation, she often appeared to make her own excuse to comply in order to deny the implication that she was submitting to authority; for example, she eventually agreed to come in from the playground, but only, (she argued) because her hands were cold.
  • It is currently difficult to ascertain Dinky’s level of attainment due to her non-engagement with many curricular tasks.
  • It is very rare that Dinky will complete a task in a way that an adult intended, even when accepting a ‘forced choice’. for example, dinky happily began to draw a picture of a fox that related to the story they were reading (as the adult intended), before gradually changing this to a picture of a tiger.
  • She is considered to be primarily a visual learner.
  • Her attention and listening skills are poor due to her need to control the agenda.
  • demonstrated some difficulty with sequencing.
  • takes language literally
  • uses language to manipulate the agenda
  • can hold a simple reciprocal conversation when she has chosen the topic herself
  • Sensory needs eg heavy persistent rocking on her chair and licking door handles
  • very poor understanding of danger and needs close supervision in order to ensure hers and others safety.

summary of SEN

Dinky can at times demonstrate some lovely behaviours such as being helpful, kind and polite. She has significant and complex needs; her primary difficulty in my opinion relates to her particular pattern of social and emotional needs that has led to a provisional diagnosis of PDA. Dinky receives a very high level of adult support in school, and is currently in a small nurture group on a full time basis. Staff now appear to be using many strategies that would be recommended for a child with a diagnosis of PDA. Nonetheless, Dinky is unlikely to currently be making academic progress due to the significant impact of her social and emotional needs, and staff are required to supervise her closely and act promptly in order to keep her and others safe. It is evident that Dinky’s anxiety levels lead her to a constant need for control of her environment, This need impacts upon the quality of her social interaction and hinders her ability to learn and comply at school. There are concerns about the sustainability of her current placement.

Most of the strategies, are also ones noted by the social communication team regarding PDA, with the addition of allowing her to be a helper or teacher, although it is made clear the school should not allow her to take advantage of the power!)

The last section on the summary of SEN is brilliant evidence for a need for special school.

Currently Dinky is still at home as a member of the school’s senior leadership team has failed to contact me for another day! This is despite receiving an email from the governors:

I¬† confirm that I have received your email. I have¬†read your account of the¬† issues relating to Dinky’s schooling and am writing to advise you that I will¬† be¬†following up with the head teacher as a matter of¬† urgency

Pfft!

Got a visit from the integrated services lady.. Dinky was her usual controlling, hyper self while the lady was here and we had to go into her lego infested bedroom to have a 5 minute conversation as she refused to go up there.¬†I thought she would refuse to let¬†us and go up, so we went up instead! I explained the situation regarding the school. She wasn’t best pleased, but didn’t say she would help in any way!

Also it seems¬†things are not quite over with¬†social services. When the social worker tried to pass our case on for CAF+, it was declined, and we have been passed on to have an assessment of needs from children’s services. GREAT! although to be fair both the social worker (when I phoned her to clarify the situation) and the SN group leader said not to worry, if there was any real concern they would have come round a lot sooner considering that the original phone call was made 2 weeks ago, and to use it as an opportunity to get the more support, possibly through direct payments ect.

There is good news! Through PDA strategies I managed to get Dinky to do some ‘work’ while she was at home! The bit I was most proud of was her gingerbread man! (Which she turned into a gingerbread woman as I praised how much it looked like the one in the book!)

 

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I took Dinky out of school for the time being

Well today was interesting! (As are most days when you have a wonderful child with PDA- diagnosed or otherwise!) Today was no exception.

Dinky was being slow, wouldn’t get ready for school, and was hissing at me over getting her shoes on. I knew it was because she was going into that sorry excuse for a school. She was going to go into the staffroom and play games, they would try to force work on her because they think that somehow if she is happy playing games she is then cured of PDA temporarily, then they see that is not the case!

I purposely didn’t book anything in for today as I wanted to do the other housework that I have been neglecting (the deep clean stuff and moving the piles of clean washing into the relevant rooms rather than taking them from the pile to wear that day!), and have a bit of time with NO paperwork, no phone calls, and¬†no emails.

Well it didn’t quite happen.

I watched a film, got bored had a look for things online. Started worrying about getting a call from school. Then I got annoyed as I remembered that the school were supposed to phone me yesterday to discuss Dinky’s provision within the school. I didn’t get that phone call. I then got really annoyed as technically I haven’t been informed of the provision change.

I was no longer in the mood to ‘relax’, so I looked up carers assessments, and by law I am entitled to one, and phoned the local number, only o be passed back to the numpties at the child disability team. Who again said that Dinky didn’t fit their criteria. I said I wasn’t asking for Dinky to be assessed, I was asking for my needs as a carer to be assessed, by law if you are caring for an individual for a substantial amount of time, which I do,¬†then you are entitled to a carers assessment. She said she would send out forms. I got extremely confused, as I am sure someone has to be present at an assessment. She tried to fob me off with a one off ¬£250 payment for a short break for parent carers which is an annual pay out. As if I could pay for a 1:1 support for Dinky for a few hours a week for a whole year on ¬£250!

I asked for a carers assessment. She had no idea what I was talking about. MUPPET!

I got fed up.

I started thinking about the TAC, the social communication report and all the other stuff the school haven’t done and got very angry.

In July’s TAC I told them this would happen.

In September’s TAC The Muppet asked what I was so afraid of, I told her I was worried it will escalate and Dinky wont cope.

Now we have had 8 exclusions in 9 weeks, dinky playing games in the staffroom and stressing out at home, barely sleeping. Pfft.

 

I wanted answers.

I grabbed my coat and walked to the school. I asked the receptionist if there was any member of leadership team- apart from The Muppet, that was free to discuss Dinky’s provision. She said that she couldn’t find anyone. I told her it was a simple thing that I am asking, surely there must be someone that can tell me how the school plans on educating Dinky.

Apparently not!

She said The Muppet would be available in 5 minutes. I picked up the school prospectus and read the following

In my role as Head Teacher I am often asked to describe what I think is important about our academy. My answer is always the same. We put the children first. Every child is special. Every child is unique. Every child deserves the opportunity to be happy, to feel safe, to feel valued and to be successful.

and ended with “Unless you happen to be Dinky! Also I do not want to start an argument with her today, omission of facts is equal to lying, she should remember that in future when contacting social services about families! If you can not tell me how the school intends to provide an education for my child then, can you please go get my child”

Out she comes with Dinky who is upset that she is leaving at playtime. I tell her we are going to go get something special from the shop and play together at home. She is not coming home because she is in trouble with the school, rather, that mummy is very cross at the school, and I want to take care of her. Which she was happy with.

The receptionist asked me to sign dinky out. I wrote her name, and under ‘class’ wrote

Staff room or where ever suits the school

Under reason I wrote

Not being educated

That should be fun for other parents to read as they sign their children out of school for the rest of the week!

Until the school have the decency to contact me and tell me what they are planning to do regarding dinky’s education for the time that she is there, then I shall keep her off. The more time she spends off the worse her record is, the more likely that everyone involved in her statutory assessment process realises that this IS NOT GOOD ENOUGH!

An education establishment that is not educating one of its SEN pupils.

When we got home and Dinky was spinning, while watching monsters inc on the TV, Anna Kennedy OBE, posted this on facebook:

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which is exactly what I am trying to do for dinky.

I wont give up, it is not in my nature! I WILL find a way to make it happen, but first I need everyone’s attention… I believe her attendance rate dropping like a sack of spuds from 100% (with the exclusion of the exclusions) down to however low it will go until I get answers and am satisfied that the school are going to act in Dinky’s best interests, should be enough to get the attention of the relevant professionals! Then I can make my case for getting her in the right provision. All the research indicates early intervention is key, so how come we have gone past that.. how bad does it have to get before someone pays attention?

Its the illusion of Inclusion. Dinky is not being included in mainstream, if anything she is being excluded to the hilt without being excluded from the premises, this is not good enough! This should not be allowed to happen… How are people going to know unless I make them aware… Drastic times call for Drastic measures!

I am aware that there is a possibility that I might be fined by the local authority for unauthorised absence. Although I am sure I can fight that on a number of grounds, namely that the reason for the fines is because the children should be in school getting an education, well, in Dinky’s case even if she is in school she is not receiving an education! They would probably have to take me to court in order to get a penny from me!¬†Of course then I could launch a counter claim for the times she has been illegally excluded from school!

I told Dinky that there is no school tomorrow, that we are going to have a nice relaxing day. She watched the rest of Monsters Inc, then as I was setting up the table ready for Lego stealth learning at the end of the film, I called her. I went over to find her absolutely Sparko on the sofa. She hasn’t slept much in 2 nights, that is with her having her melatonin and having gone to soft play for two and a half hours yesterday!

The relief of not going to school was evident. I cant home school, I just don’t have the capacity in myself to do it. However this will do until they get her in a special school that can meet her needs.

People (especially those who are technically called ‘professionals’), tend to underestimate me and judge me by the fact I live in jeans a fleece jumper and a baseball cap (and I look about 15- which is not good!). Well, I think they have royally done it now!

I will not give up. My Dinky DESERVES better!

We both felt so much better since I brought her home and she had her spinning time.

 

I shall keep the blog updated!

Stressful weekend…

I am so sick of hearing about cases where parents are made out to have Munchausen’s by proxy, honestly… who in their right frigging mind chooses this life?????

Of course a person could argue that they wouldn’t technically BE in their right mind.¬†I’m so exhausted I cant even be bothered to rectify my opening statement.

I had bits of paper sticking out of my overflowing presentation folder, so I had to buy a new one on Friday and spent 45 minutes re collating the paper work into some logical order with all the relevant information at the front.
I have now digested the social communication report which is interesting. The strategies are of no shock to me. I am quite glad that the ones I highlighted to the school are on there.

Dinky has spent most of Saturday controlling my dad. He is in one of his ‘I understand she has a condition’ phases, so I am utilising it while it is here! Dinky had him build her a training base for her ninjago characters and¬†I was told off¬†for not getting Kai, the Red Ninjago character,¬†but it isn’t all bad¬†because she had both versions of Lloyd the Green/Gold ninja who was bad but turned good. She also told me she wants a ninjago cake for her birthday. I am actually considering trying to find her a little¬†Gi (martial art uniform) in green so she can go to her party as Lloyd.

Today Dinky has alternated between¬†a small number of things, Lego¬†Ninjago episodes, Lego Ninjago playsets, spinning,¬†and mouthing EVERY¬†rubbery item in the vicinity, it took a while to actually convince her to¬†use her chewigem. I am not one¬†for endorsements, but if you are reading this and your child is a chewer definitely have a look at Chewigem.co.uk (they do have an American site¬†too chewigemusa.com¬†). I like them because they don’t actually look like medical chews. Dinky has a necklace that looks like the candy from cut the rope!

Anyway, back to today. Dinky was flitting through her activities and at one point she smashed into me and demanded tickle time. I indulged her, and it seemed to calm her. She didn’t want me to play Lego, she didn’t want me to read with her, she didn’t want me to go in her sensory den, she wanted to be in her sensory den with her iPad and Lego alone. I feel suitably abandoned. Obviously I was at her beck and call for drinks, snacks and to be at the receiving end of the occasion soliloquy regarding Lego or a child at school.

I have been trying to figure out what on earth to do about The Muppet.

What do I do?

The woman contacted social services over the most natural of things. She doesn’t have kids, so she wouldn’t know. She told them about something I said when I was ridiculously stressed out, and suffering insane levels of sleep deprivation. She told them that my baby is controlling (although that is better, she used to say power seeking), displays extremely challenging behaviour and doesn’t want to come home. The first 2 spot on, the third, well, that was her interpretation, the interpretation of a muppet with no idea of a mother child relationship, without knowing what it is to be a parent of a child with complex additional needs, without taking on board the provisional diagnosis of a child within her school. The real cause of that is the ultra high anxiety levels and the fact she is faced with 3 demands. 1) get shoes on.. because my child likes the sensation of walking around in her socks. 2) Put coat on, which is enough of a demand in itself for a child with PDA with such a high level of anxiety, but with the added demand of doing it up which she still finds tricky and gets frustrated with. 3) Walk the 10-15 minutes home.

It isn’t home that is the problem, it is the 3 demands she faces to get there.

However she left out that bit. She left out the bit where a highly trained medical professional has said Dinky definitely has PDA, where this medical professional has written it on two different documents, and another document sent back to say she also fits the criteria for ASD given the information that the Paed sent to CAMHS. She misses that bit out, because it sounds worse when you put sexulaised behaviour with avoidance, challenging behaviour, and not wanting to come home, that spells abuse.

Thankfully the Social worker was clever enough to see it for what it was. A child with an autism spectrum disorder and typical child behaviour.

So what do I do about the fact that The Muppet left that out?

-Do I call her out and say “that was out of order, I want an apology”?

-Do I leave it as it didn’t go anywhere – apply the no harm, no foul rule?

-Do I take it further as it was completely unacceptable?

-Or do I wait, refuse to talk to the school until the TAC and bring it up there and see what the other professionals say?

I opted for the last one. I have written to the Muppet and told her that I am cancelling our meeting tomorrow. I want to know why Dinky is in the Staff room in the morning, how that impacts on her education, and how to stop her from feeling excluded, and I would also appreciate a copy of the updated support timetable.

I also decided to respond to the social communication team email. The email on Friday was not only to deliver the report, but also to ask me if I wanted to meet up with the specialist TA, and go over her role with regard to Dinky. She also said do not be afraid to contact her if I wanted to. Which is always handy when the same person is the one who chaired the PPM and sits on the SEN panel for statutory assessment and statements of SEN.

So I did.
I thanked her for her report, took her up on the offer of meeting the specialist TA, and asked her how it was going to work when Dinky is constantly being excluded, twice last week, and now that she is no longer in Nurture.

I wasn’t expecting anything back, but I did get an email back, at 5.30pm on a Sunday! She said she was going to phone the school first thing and thanked me for updating her.

I also took the opportunity to update my parental views with the SEN caseworker given that her provision has changed, we have had 2 more exclusions and I have new understanding of the special school criteria.

Honestly, this is where people realise what parenting really is. No matter how stressed, how hard things have been, a hug and an I love you mummy, from Dinky is enough to keep me going.

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