Dinky is growing

I am constantly amazed by Dinky, more often since starting her special school.

She is just growing and achieving beyond what I thought was possible 18 months ago. Readers are going to start getting bored of me praising the school, but I cant thank them enough.

Dinky’s communication has improved a lot.. she has always been a talker but not a fantastic communicator, I learnt very early on that the two aren’t mutually exclusive. Now she can tell me when she feels sad and instead of running off, she will ask for something.

I laughed so hard the other morning when I had this conversation with Dinky (she was in a state of lower anxiety which was great)…

Me: Yes you can have a snack once you are dressed

So with my help she gets her t-shirt, pants and trousers on… and promptly runs out of the room…

me: where are you going? You’re not dressed yet

Dinky comes back to the door- looks at me with deep concentration on her face as she sees me holding up a pair of socks… She motions to her top and trousers and

Dinky: Technically… Dressed!

Me: But you haven’t got your socks on (I was trying so hard not to laugh)

Dinky: Not Nakie (naked)

She won that one- I tried so so hard not to laugh! I put her socks on while she had an apple.

I was just so proud of her being able to use a technicality to get her way. I know most parents would be annoyed, but technically it is my own fault for not specifying which items of clothing constituted being dressed and as she frequently runs around the house and school without socks- to her they are an optional extra.

Progress shouldn’t be monitored by exams and tests… it is the little things that can be a sign of great progress.

 

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Transport nightmare

When I was looking at schools for Dinky one of my main concerns was how far away it was. This was for many reasons, one of which being, that at the time I didn’t own a car and I was still taking driving lessons. More reasons included

  • What if they didn’t turn up?
  • What if they were late? Dinky isn’t a fan of waiting around
  • What if they didn’t get Dinky? were too bossy, too strict, too much for her
  • What if Dinky couldn’t cope with the journey?
  • What if she had a meltdown at the end of the day because she hadn’t finished and couldn’t get in the taxi?
  • What if Dinky doesn’t like them?
There are lots of variables and I can tell you that I am not a fan of variables! Too many what if’s. The problem is that in the end that choice was taken away. It was ‘go to this school that is out of county’ or her not go to school at all.
While I love my child, I utterly respect those parents who are able to make that decision and home school, but 11 months at home with Dinky showed me that we both needed our space and that 8 hours a week respite at the time just wasn’t enough to recover from the challenging behaviour and the constant walking on eggshells. I felt that if this became the only option then of course I would happily take it on board, but I felt we owed special education at least a try to see if Dinky could cope with it.
I have written quite a few posts about the fact that she goes to a school for children on the autism spectrum with moderate to severe learning difficulties and while Dinky hasn’t got a diagnosed learning difficulty (except her reports from school say specific learning difficulty and to be honest I haven’t asked them what that is because I keep forgetting due to the reasons I have had contact with them lately). The reason I am happy with this is it gives her the slow paced and less demanding atmosphere she needs in her education placement. The school, to their credit, have been very accepting of Dinky’s demand avoidance and have been proactive in coming up with strategies to get the most out of her while not poking the PDA bear.
Sometimes it works sometimes it doesn’t. I’m just so happy that Dinky likes school and that she is learning, might not be anywhere near as much as her peers, but I am more than happy with the progress she has made.
Things are not allowed to go smoothly for us though, it would be far too much of a change for us both and we would start to believe that we had been transported to a parallel universe (Sometimes it already feels like that due to the complete turn around in terms of health, education and social care that we have seen in the last year or so).
Transport.
We have had nothing but problems with the taxi firm since they started in January. Lateness was my main issue with them, the escort that was in the back of the car with Dinky would constantly blame the driver (although how much of that I believed at times I am not entirely sure)! They changed drivers after the summer and low and behold they were still late! Which only confirmed my suspicions that she was the one holding things up before the summer! The second day of this term they didn’t even show up in the morning!
The school were struggling to get Dinky in her taxi and I was having more difficult mornings even though Dinky was more than happy to go to school and play with her teacher and her favourite TA. It got to the point where Dinky had started refusing the taxi and I have collected her a few times over the last couple of weeks. As one other parent pointed out, it was a good thing that I managed to get driving lessons and went through the hassle of sorting out the car and then went through the hassle of getting the car I have now, as I would have been stuffed otherwise.
I was a bit wary of picking her up from school the second time she decided that she didn’t want to get in the taxi and up to that point we (school and I) hadn’t gotten to the root of the issue. There are a few things we thought it could be initially
  • She didn’t like the escort (who is a sour faced moo! And I’m not the only one who has said it), it isn’t surprising as she can be a bit hard on Dinky and gets frustrated with the repetitive songs Dinks plays. I had absolutely no sympathy for her as her husband runs the taxi firm and she knew what she was getting into, Dinky has a transport care plan which points out at various points that she is autistic, if you can’t handle repetition, especially considering the main times it would be used was due to her own poor time keeping which messed with dinky’s routine.
  • She didn’t like the fact that I am now volunteering for the parent carer forum and am not at home where she thinks I am, and this is her way of being in control.
  • She wanted me to pick her up because the other girl in the class that she likes gets picked up by her mum who lives in the same town as the school and isn’t eligible for transport because she lives within 2 miles. (we have to add on 23 miles to that!)
  • She loves the new car and wants to come home in the new car.

This was the list myself and Dinky’s teacher put together.

As it happens it is a mixture of all of them which I found out after a very stressful conversation ‘with’ Dinky ( I say with, but it was more me explaining the situation and her shouting at me in response).

So I phoned Transport last week. She said she would try and sort something, she called me back Thursday to tell me the taxi quit! This initially made me think ‘what cheeky so and so’s! Quitting insinuates they have had enough and decided not to continue but they were the ones who displayed poor time keeping and upset dinky enough for her not to want to go in the taxi!’. However my response was, “Good, Dinky didn’t want them to continue anyway”.

Between school and I we decided it was probably a good idea for me to do the school run up until the contract ended, but I have already promised my time to some very important meetings for the parent career forum, and I could do some afternoons but not the mornings. I gave Dinky the options and she has agreed to go in the mornings and for me to pick her up every day but Wednesday and we are going to go out from school Friday as she finishes early on that day. After half term Dinky will have a new taxi service!

I confirmed this all with transport Friday, who are going to reimburse me the cost of pertol. I don’t think the current taxi company were happy when I text them, but I don’t care. Actually I have been thinking they should re-brand their advertisements, I have some suggestions…

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Another week battling with education, health and social care!

For those that do not follow the Facebook page, I had decided to take a few days away as things had become too overwhelming for me.

As those who regularly read this blog (thank you), you will know that there is always SOMETHING going on here. Especially as I have been battling health, education and social care all in one go! This week was no different.

Recap:

Dinky has been at home for a week and a half now, which, was due to the school having changed her room with less than 24 hours notice, while giving me this notice the Senco also told me that the Tuesday cover was changing too. All this on top of the fact she was now part time and was no longer in Nurture. As much as I hated the idea of her being in nurture, they had finally got the hang of the PDA strategies and were at least trying to understand her, and SHE liked it. Oh and she had a new 1:1 who has absolutely NO training whatsoever, and is a parent of a child who has recently left the school.

These changes were brought up three days after half term, after a meeting with the school and the social communication team, where the social communication team said that Dinky does not cope well with change at all. The school just do not listen or care if it does not meet their own agenda… I’m sure the school have PDA/ODD.

To add insult to absolute injury… the school put banners up on the roundabout close to our house saying they are a ‘GOOD’ school. Hmmm, I do not think they told Ofsted how they have treated Dinky or the other lad in the school who has ust had his diagnosis changed from Asperger’s to PDA.

So I took Dinky out of school on the Thursday.

Friday: I emailed PALS (Patient advice and liaison service)/ service experience team for our NHS trust. I said that I was not happy that the first referral to the paediatrician for an autism/PDA assessment was done 12 months ago, yet despite the provisional diagnosis being made, it seems there are no plans to do the actual assessment any time soon.

On the Sunday my dad took Dinky to go watch the autism friendly showing of the Lego movie, in that time I went to the roundabout, cut all the cable ties and returned the banners, in tact, to the school just outside the delivery door! I didn’t tell them it was me and I would not deny it if it was ever asked of me. I also had plans to add my own quotes to the roundabout such as “We can fix her” – Headteacher’s opinion of a child undergoing autism assessment, and “too time consuming”- says a teacher about meeting a child’s needs, if they dared to put them back up. Regrettably they opted not to put them up again!

Monday: I got a call from the paediatrician. He asked why I was making a complaint. I told him it wasn’t about him and I appreciate his input, however I was hoping that we might have got a little further by now considering he thought it was pretty obvious that Dinky has PDA. He gave the ‘there is a waiting list for the actual assessment, and I thought that CAMHS were going to take this case on which is why I didn’t move it on, but that has been done now’ spiel. I explained that that is not helpful to us. As much as everyone keeps telling me her needs should be met as it is supposed to be needs based rather than diagnosis based intervention that we can wait, we cant because that is just not the case! It definitely hasn’t been the case for us, and especially not where the school is concerned! instead the school have said attachment (to which he let out a sigh and said “PFFT”). I thanked him for his provisional diagnosis and said it just isn’t enough, not when integrated services went into our TAC meeting in November shortly after it was made and said “but it is ONLY provisional” and the school had said “It COULD still change”. He again stood by his provisional diagnosis and said he understood my frustration.

Tuesday: I got a call from the social worker. She said she didn’t know if I could “Just take her out like that”. To which I replied “WATCH ME”!!! I told her I had, had enough of them not taking Dinky’s needs seriously. She said she understood but it made her job slightly more difficult as she now has to find out what this does in terms of her assessment. I’m guessing this will be a ‘child missing from education’ issue, I didn’t ask. I told her how frustrated I was with everything, how many professionals claimed to want to help while none ACTUALLY helped in a way that was actually helpful! As much as the SN group is great and Dinky LOVES it, it cant really be classed as respite as by the time I get home I have about 1 hour before I have to collect her, and that is only once a month! I didn’t mention the new 1:1 we have fortnightly on a sunday for 4 hours as actually it is much more expensive, although with her being picked up from the house I will actually get 3.5 hours (she has to do paperwork before she goes).
So she is going to contact the school and education to ‘see where we stand’.

Wednesday: I got a call from the head paediatrician at the CDC. She said Dinky was now on stage 2 of the 3 stage autism assessment and that should take place December 2014/January 2015. She said it in a kind of non interested monotone, so it took a few more seconds than normal to sink in! 9/10 MONTHS!!! From NOW??? I went through how much Dinky was struggling with education and how to get any actual assistance we really needed to complete the assessment much sooner! I was completely taken aback by her blasé attitude. Nearly 2 years for an ASD assessment is disgusting! She said that the school should be going on need and not diagnosis, I told her that was difficult when the school decided to make up their own diagnosis and handle her in the worst way possible. She said I should actually be complaining to CAMHS as they were the ones who turned her down. I said that CAMHS have said they are not an ASD assessment clinic, that is what the CDC do for primary aged children, and considering that PDA IS one of the ASD’s it comes under their remit at CDC! She said “Actually it is a bit more than that, and needs to be assessed by a psychologist.” To which I replied that she has been seen by the educational psychologist, and as a psychologist and as the letter from CAMHS recommended her involvement in the assessment of Dinky, that they actually use that to help! She mumbled something or another. I said that we need a firm diagnosis and the hold ups we have encountered so far are not Dinky’s fault, to which she had no choice but to agree. I told her about me taking Dinky out of school and what she was like after being there for the 3.5 hours, she said “Well she sounds autistic!” (she also mentioned giving Dinky’s file the once over to see why it hasn’t moved forward faster), and said she shall ‘see what she can do about bringing it forward’. We also discussed the fact that the social communication SaLT needed to go into school to assess during structured and unstructured time, to which I replied “It wouldn’t make much difference to doing it at home considering that she was moved to a tiny little room with just enough space for a table and two chairs with a 1:1!”. She said that separating her from everyone was not the answer!

Only after the call did I realise that the clinical director of paediatrics for our trust said that she had already done that! So why she would still only be seen at the very end of this year/the very beginning of next year is beyond me!

Thursday: I phone the SEN team to find out the status of the statutory process, only to be told that they are STILL waiting for the OT report. I took the opportunity to tell them that I had taken Dinky out of her school until suitable provision was found! She didn’t seem to happy, but I explained why, and it is up to them to deal with it which ever way they want.

I then got a call from the lovely lady at PALS who asked if the CDC got back to me. I didn’t mean to mention it, but I said that the education thing will get better once we have a statement, however that could get delayed as they still haven’t received the OT report. To which she said “I’m on it”

Friday: I get a call from OT, report is ready to go to SEN team and I ask for a copy…

The purpose of the Screening Clinic and role of Occupational Therapy was discussed with Dinky’s Mother and consent gained.

PARENT CONCERNS:

  • Dinky tends to eat everything
  • Dinky’s reaction to sounds

 

CURRENT SITUATION:

The following information was gained through discussion with Dinky’s Mum.

The focus of today’s assessment was to explore Dinky’s reaction to sensory experiences and understand how these impacted on her ability to function and participate in activities.   Each sensory system was therefore discussed in turn.

Touch:  Dinky enjoys touching and feeling “squidgy” textures and doesn’t mind getting her hands messy.  She will often explore objects in shops and it is difficult to bring her away from textures she enjoys feeling.  She has a box of ‘feely toys’ at home but does not have access to anything similar at school.

Dinky has difficulty with hair cutting and washing and a written handout was provided today providing strategies to help with these activities.

Movement:  Dinky will spin continuously, sometimes for up to 30 – 40 minutes.  Her Mum feels she does this to calm down or when she is anxious.  She seeks movement and becomes distressed when she is not able to move and spin about.

Noise: Dinky finds coping with loud noise difficult.  She has access to ear defenders, and will often make noise in order to overpower the noise she doesn’t like.  Dinky finds it difficult to cope with swimming pools and her Mum is looking into accessing a quieter pool.

Vision:  Dinky does not like bright lights and can become distressed if she cannot wear her sunglasses in bright sunlight.

Smell:  Dinky loves smelling food and objects and will often smell food before eating it.

Self-care skills:

Dressing:  Dinky finds fastenings difficult but can otherwise dress independently.

Eating and drinking:  Dinky is developing her cutlery skills.

Washing:  Dinky loves the water and is developing her washing skills.  She is able to wash her hands independently after using the toilet.

Toileting skills:  Dinky is able to use the toilet independently.

Sleeping:  Dinky finds it difficult to ‘wind down’ at the end of the day and go to sleep. She now takes melatonin in order to help her get to sleep which is working well.  However, Dinky will often wake up during the night and has difficulty getting back to sleep.

Other information:  Dinky is currently going through the statementing process as she is not coping within a mainstream class.

RECOMMENDATIONS / ACTIONS:

Dinky’s Mum reported significant sensory difficulties today that are impacting on her ability to participate in activities both at home and school.  Dinky presents with a need for strong sensory input.  It is therefore recommended that Dinky have a school visit by the occupational therapy in order to further assess her sensory needs and see if there are ways that Dinky can access the sensory experiences she needs within the school environment.

Please do not hesitate to contact me if you would like to discuss any aspect of this report.

To be completely honest, it is not exactly helpful, nor is the fact that they suggest se is assessed in school. Like I said to the CDC, even if she was at school her sensory needs wouldn’t be tested with a 1:1 in a tiny box room!

So that has been my battle with the ‘Big 3’.

other than that, Dinky has been much calmer, although not going to school doesn’t magically cure PDA.

We have played with lots of lego, watched films, Dinky has done some writing, some maths, we have been to London eye, London aquarium and dinky tried the London dungeons. She has also been to a different SN club which is held at our local park, been to a workshop with me (in which she was showing more of her PDA skills to the SN group leader- to the amusement of all in the room), been out with my dad and the new 1:1.

But the biggest news is… Dinky lost her first tooth!

As a parent of only Dinky, I did not know how the whole tooth loss and tooth fairy thing would go down for any child, and how that might be different for Dinky. She has been very much preoccupied with the gap, the letter and the certificate from the tooth fairy were disregarded, although she has kept the coin close as she knows she can use the coin to buy something. Other than that, she has been rather disinterested.

I wont say I will blog as regularly as Dinky is now at home, which means if I do not want a trashed house, going out a lot. (So glad I brought those Merlin annual passes!).

5 year old…formally or illegaly excluded today? I have no idea!

Today is one of those days where you wish you had stayed under the duvet!

I had a phone call from my American friend whose daughter goes to dinky’s old school. We only spoke 3 weeks ago. It seems so much has happened this week, let alone in the last 3! As for my friend she has had a lot on her plate. Her poor 5 year old daughter was being bullied by 7 year olds. It had been going on for a couple of weeks and no-one had picked up on it at school. Anyway, that phone call lasted until just after 1am.

Dinky did her best ‘I’m asleep’ routine this morning. It took a while to get her ready to go and the only way I could get her out of the door was to let her have her headphones on. Which was fine. We got to school ok, but Dinky wouldn’t give me the headphones back. She was messing about during the activity and when I managed to get them off her she was trying to fight me for them. Needless to say that she wont have that again!
She was kicking off so the TA told me to just go.

So I left her there and went home. To find my Dad had locked himself out and needing his spare key. I let him in. Apparently he went out to smoke and shut the door on himself… muppet!  I went straight to my –it has everything I don’t need but may need- draw, where things like spare keys live. My grandad’s keys were in there but my dad’s weren’t. Hmm.

We had a bit of a disagreement as to who had the keys. He was annoyed, I was equally annoyed. If I had them they would be in the draw.

So I look everywhere I may have put them and they are nowhere to be found.

Then I think about Dinky. She has a habit of putting things on the bottom drawer of my bedside cabinet. There they were. I sent him on his way. Caught up on facebook, and got trigger happy on Call of Duty on Xbox.

I then caught the bus to town to go to my keywork session. I was just coming up to the building when my phone rang. It was the school.

Apparently Dinky had a bad morning at school and had hurt someone so was being sent home.

So I had to turn round and leave a message for my keyworker to let her know what had happened. I caught the bus back up to the school and was there for 1.30pm. The head of pastoral care was there. I had now met the full set of the senior leadership team!

He said that dinky had a bad morning, had refused to do as she was asked and kicked a teacher, so they were sending her home.

The senco brought her out to me, she was not in a good mood at ALL.

The HOPC (head of pastoral care) said that dinky was asking if she could have television on when she got home. I said no not until it would be time to come home. He caught me well off guard and I should not have said that! Dinky was starting to get more upset.

HOPC: You are being sent home, tomorrow is a new day, we look forward to seeing you tomorrow for a fresh start.

Dinky: I don’t want to come to school. I hate this school.  I am not coming to school tomorrow!

It went backwards and forwards, but she was adamant. Then:

HOPC: Well, you need to go home with mummy now.

Dinky: I don’t want to go with mummy. GET AWAY FROM ME!!! I hate her! I’m still not coming to school!

I won’t pretend I wasn’t a little hurt.

HOPC: Are you ok carrying her out?

I had to carry her while she was literally kicking and screaming. Which was not good. I had to put her down once we got outside. Then she refused to come home.

It was hot and I am not a fan of the heat at all. It gets me all flustered and short tempered. I quickly got frustrated with dinky as she refused to walk home. She said she wanted to go back to school. When I eventually got her to move she stopped outside the gate to the early years playground as the early years children had come out to play. Which meant again, she wouldn’t move. We were blocking the pathway so I had to get her home. I picked her up, again kicking and screaming and got her to the community centre across the cul de sac. The nursery children were playing, dinky was screaming and shouting and crying.

One of the kids started shouting “cry baby!” at her. Which made her more upset. Then one of the nursery staff laughed. I then called across saying that allowing the children to name call a child who is obviously in distress is completely unprofessional, and to laugh about it is worse!

So I had to pick her up and get her away from the other children.

Then there were teenagers having lunch, or at least trying to while Dinky was still in a state. They were talking loudly about what a little shit she was. So again I had to move her.

Then she bit my hand and kicked and I dropped her.

Oh dear!

Dinky: you are mean mummy you hurt me.

We had this battle, walk a bit, sit a bit all the way home.

Once in dinky went straight up to her room and started trashing the place.

Then she got into the hugging state. SO she came down and we had a hug. She lay on me and I tried to reassure her. Then after a few minutes she went to sleep, again a few minutes later she was woken by me, trying to get the phone.

It was the integrated services lady. She was really nice and asked how dinky was. I told her she had just gone off to sleep before the phone rang. She apologised to which, I told her there was no need. She said the school had phoned to say she had been send home as she had a bad day at school and kicked the teacher. She said that she had arranged a meeting with the head teacher just after my meeting with her on Friday, and that she would like to come and see me after.

I told her how it took us 30-40 minutes to get home and she said that for dinky to now be calm means at least I’m doing a good job by managing to get her calm quickly. She said that she is going to support me to get dinky the support she needs.

Dinky was then awake so I let her watch some T.V as it was now nearly 3pm. She was much less anxious and said that she was sorry for being naughty at school. I told her it is ok and that I love her. She replied “I know, mummy I know.”

She was laying on me still and out of the blue she said

“They put me in a dark room with no toys, and no teacher to look after me.”

I looked at her in surprise. She carried on…

“There were spiders…. And …. Lots of bugs!”

Well, she was coming back to herself properly now, her sense of humour was back!

We spent the afternoon relaxing and had pizza for dinner. I decided that it probably wasn’t a good idea to push it and go swimming tonight. So I left it.

She is still messing about in her room and not going to sleep but she at least seems content enough.

I phoned the ISPEA helpline, as when I looked on facebook I was informed that Dinky was actually informally excluded.
After a lengthy call with them, it turns out that they were spot on.
Dinky was illegally excluded, unless I turn up tomorrow and have written confirmation of a fixed term exclusion, and even then I have grounds to complain about the exclusion as I wasn’t aware of it being a formal exclusion and that it seems no reasonable adjustment was made to take dinky’s SEN or disability into consideration. It also seems drastic for a 5 year old.

As for the school trip, I was spot on they are not allowed to discriminate against her and I have some more information.

Again statutory assessment was brought up.

Just these two incidents prove that this school can not meet dinky’s needs. They should have been able to handle her on site and sent her home (illegally) and the fact that they are again saying they do not know if they can manage her behaviour on the trip, goes to show that they do not have the resources for her.

So I have to decide whether or not going down the statutory assessment route is worth it. It could mean dinky gets a set amount of hours 1:1, which will not only help dinky, but the school too. As if they can keep her calm, and someone is tuned into her anxiety levels then they may have the ability to avert some of the situations the school find themselves in.

This leaves me with some thinking to do.

Do I say something tomorrow? Do I ask if she was formally excluded? If she was do I fight it? DO I use this to show that they need help to cater to her needs?

Do I say yes but wait until I meet with the head on Friday?

I don’t know.

The whole situation has been a nightmare. I don’t want dinky to think that if she behaves like this then she will be able to just come home, and I do not want the school to exclude her formally or illegally!

Getting her hoe was a nightmare and again this shows that the school are not thinking properly. Dinky’s IEP acknowledges her problems with transition yet they still excluded her, which meant something completely out of routine and completely different. They did not take into account how she would react to it, or what effect this would have on her!

They didn’t think. This I will definitely bring up.

 

It feels like I have been tossed into some parallel universe!

Most kids go to school and the most the parent worry about is whether or not little Timmy got paint on their jumper again.

Here I am trying to work out whether or not they just formally or illegally excluded my 5 year old!

You cant get any more different to what I envisioned for dinky for school…

But I am here now and I have to suck it up, place my amour on, put on my war paint and prepare to do battle….

(At least I can not say my life is dull and that I am not learning anything! By the time Dinky is in secondary school I will probably be able to recite the SENCOP and DDA, and equality act!)