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.

 

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!)

Weekend, and getting ready for meeting with head teacher.. take 2!

This weekend has not exactly been fantastic, but in no means the worst.

Saturday morning Dinky was not in the best of moods and neither was I. When my dad came over at 2pm I asked him if he would watch dinky while I went food shopping. So I went out and got back at 4pm, I made dinner and ran dinky a bath. She loves the bath, I think she likes playing in the water. The biggest problems we have with bath time is hair washing and getting out. Hair washing drives me mad! Dinky refuses to stay still and will do anything to get out of having it done. I can not reacall how many times I have gotten soaked in the process. If her hair wasn’t so long and so curly it wouldn’t be too much of an issue, but it needs to be conditioned with detangle solution otherwise the bigger problem would be brushing her hair every day. I know she hates having the water on her face. It is hilarious at swim lessons because they put the rings to pick off the bottom in, instead of diving down to get them dinky found that if she felt for it with her foot she could scoop it up! The teachers are now baffled at how to teach her to dive down, or even put her face in the water because she is smart enough to get out of it. Anyway, she went to bed Saturday night and my dad and I watched inception with some snacks.

Sunday- today, Father’s day.
I feel kinda bad because this father’s day wasn’t exactly what I planned. First of all, dinky woke my dad up and left me sleeping, I didn’t get up until 10.30am. I told my dad he should have sent dinky into me, but he said I looked shattered last night.

Dinky was not exactly playing ball today. Sundays are becoming big issues, especially when dinky is reminded that it is school the following day.

Dinky tore all the school days off her calendar and threw them behind the small unit, she then pulled the washing over, threw her wooden chairs around, pulled her books off the bookcase, spat at my dad and emptied her craft drawers on the floor. My dad picked her up and took her to her room where she could be as destructive as she wanted as 99% of the things up there are dinky proof. I said I would stay with her but dad said It was ok, he would deal with it.  

I listened as he tried to clam her and gave up while she trashed her room. Eventually she came down after she trod on one of her toys and hurt her foot. I cuddled her, she was racking and I felt for her.

She was then very on edge all afternoon. I hadn’t managed to get her to do any of her homework except to plant the seed and water it. She wrote ‘mi’ and then scribbled all over the page and said she wasn’t doing. She said she couldn’t write because she was too stupid. She pulled out many more demand avoidance strategies and then spat on the booklet. I tired to get her to read, she spat on the book too, then spat on me.

Bedtime was just as much of a battle. I must admit, I didn’t handle the avoidance very well today. When she wouldn’t put her night time pants on, I shouted at her. Which made her less likely to do it any quicker. I regretted it as soon as I shouted because I probably added another 20 minutes to the bedtime routine.

 

I am really anxious myself as I have the meeting with the head teacher tomorrow. I feel like a naughty school girl after the letter I wrote on Friday, and then given dinky’s behaviour, it seems even more reasonable that she doesn’t go on the trip to them.

I have to remain strong though. Dinky would not be kicking off like she is at the moment if the school paid any attention to me before she started, when she first started, three weeks after she started and last week. They didn’t listen and now they are complaining about her behaviour. Muppets!

They haven’t given her any concessions and refused point blank to take note of what worked at the previous school.

“Well, this is a different setting, we will wait and see what she is like”

Great! Well done SENCO, in the process of waiting and seeing, you have managed to let it go too far and now she refuses to go to school every morning! Well done you!

I was also worried because of something the head teacher said. She said that it seemed dinky didn’t want to leave school not the Friday gone, but the previous one. Obviously that is not the case, also if she tries to take that as dinky liking school then she really has got her wires crossed! I didn’t want to go in there and say ‘it is because she wanted to go to the park’, because it makes it sound like she is a spoilt brat and was just having a tantrum.
Luckily, the same woman that has written the paper I have read, also has her own facebook group. I mentioned the problem on there and got some great advice from both the woman and some other mums, on what the underlying causes are and also what I can do in order to change the situation in future.

Basically it is a mixture of routine, transition and sensory.

Dinky doesn’t find transitions out very easy, so she has put a step down into a routine of school followed by park, which takes her from busy, noisy classroom, to less busy, probably similar noise, outdoors, which is easier to cope with. She has done this as a step down to be able to manage the difference in school and home. She doesn’t recognise that the rain or other plans can affect the routine she has made and therefore needs to be aware of other plans or other ideas, other than the park.

 

I fully intend to bring the head teacher up to speed on PDA and prove to her that this is why dinky is the way she is, all I am waiting for is the assessment and for the doctor to put it in writing. It may not happen straight away and it may take months. However, that doesn’t change the facts. Also it means the structure of KS1 will probably be too much for dinky and I am trying to get them to see this and to prepare for it. If they carry on ignoring me than they are going to create a monster and I will have proof that I tried to warn you, and it won’t be to say ‘I told you so’ it will be to let them know they would be the ones responsible for it.

I now have a folder, a series of videos and documents to back up what I say.

It is not in my head, I am not a neurotic parent, Dinky has PDA and needs to be treated accordingly otherwise they will destroy her and they will make life harder for themselves in the long run.

I do not know how successful I will be, but I have to try right?