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.

 

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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Dinky doesnt want to go to school… professionals are starting to get PDA!!!

Today I am a very mixed bag of emotions…

Dinky was not happy, so I am unhappy for her

Professionals are believing in PDA and see that Dinky fits PDA, things are moving forward with school and now more things are set in motion.. I am happy!

Dinky did not want to go to school this morning and pulled out some amazingly gifted demand avoidance strategies!

She went back to bed, she put her headphones on so she couldn’t hear me, she hid under the table, and then the washing. She asked question after question about why she has to go to school. When I wasn’t giving in, it turned to screaming and everything in her path seemed to be a missile, and I was the target. (If anything I am sure to lose my small amount of excess weight dodging them… 5 D’s of dodge ball and all that!)

So I tried to play a new one.

Me: Well, I am going to school because I want to do the activity at the craft table with all the other children

Dinky: You can’t leave me here! That is mean mummy!

Me: well, I can go to the school and then when they ask where you are, I will say that you didn’t want to come.

Dinky: Don’t leave me here!

And she started to get dressed between screaming “you are a mean and stupid mummy!”, she had a point on the mean, but not the right reasons! I was mean for tricking her, but I thought it was pretty clever actually. I will be careful not to over play this one as it would be a nightmare to carry out!

Eventually we were ready to go, but she didn’t want to leave and was having a difficult time understanding why she couldn’t wear her new, converse type, hi tops to school. So I had another idea. I asked her if she would like to listen to music on the way to school. She did and she was happy, she got her shoes on and put her wrist reins on without an issue and put her headphones on. She loved listening to the music on the way to school. Which created another issue. She didn’t want to give it to me when we got to school. She wanted the headphones in school.

Eventually I got them off her and that was it she wasn’t happy. Straight past the TA who she hadn’t seen in 2 weeks, and under the table. So I coax her out by showing her teacher the promise we made about phonics. (Dinky keeps going under the table in phonics so I made a promise to buy a magazine if she was to do phonics nicely until the end of the week. I did a sheet so the school could put some indication if she did it or not). The teacher helped and we got her out. She then did her activity and did the writing! Shock horror!

While she was busy I gave Simba to the teacher and then left it up to her when to give it to Dinky. It all fell apart when I was due to leave. She was still very anxious from the morning. While she enjoyed the music I could still sense the anxiety that radiated from her.

She then asked the teacher for Simba. Oh dear! Really not good!

Dinky went into the teacher’s cupboard, but it wasn’t in there, but she kept looking anyway, then she started throwing chairs and then ran out of the building onto the playground. I tried to calm her but she said she wanted to come home and that if she stayed I had to stay. I gave her a hug (when she calmed down enough to let me have a hug!), and then I took her back in.

Great day back for the TA… not! She ended up having to stop a very upset dinky running after me as I left.

 

I went round to get the plan from the head. Turns out it is an IEP.

The deputy head came with the head to show me the plan. He didn’t look too impressed. It might have something to do with him asking me a week ago not to go over the head of early years’ head, and then me proceeding to go over his head, which has led to the I.E.P being drawn up. I tried to give him my best ‘it was for the best’ look. Still not impressed! Oh well… I did it for dinky. If it was about keeping the school happy then sure, I may have listened.

 

Her targets are set around her behaviour. She has 3 in total…

  1. To be kind to other children and adults and not to hurt them
  2. I will go to my quiet space when I need to be on my own or feel like running out of the room
  3. To meet my adult at the end of the day without getting upset

I was impressed that the head actually got the senco to do it quickly, but then again they were fully aware that the integrated services lady was on her way out this morning!

So I got home and repaired the damage from today’s school battle before the integrated services lady got here.

Have I mentioned how much I like this lady? She came in and I showed her the IEP. Then she asked what had been going on in the past 3 weeks since she last saw us. So I told her about dinky and what was happening at home, which made me concerned about how she was getting on in school, and then I told her that I had a meeting with the Head and the senco yesterday. She said she had looked up attachment and it didn’t fit, but the more she looked into PDA the more she is sure that PDA is the issue. She recommended I definitely take the file on PDA with me to the Paediatrician appointment on the 8th (they changed the date and the paediatrician).

She said that although they don’t tend to like parents who diagnose their children, it seems Dinky has some very (very) strong traits! I asked her if she would write a report on how dinky was when she last came out for me to take with me, and she said yes!

We discussed the issues with the school, and went more in depth about the meeting I had with the school yesterday. I did say to the integrated services lady that again the home time thing was put on me, by them saying that it seemed like Dinky didn’t want to come home. I said that it would be nice if their first port of call wasn’t to blame me.

She said that it is clear to her that I am a good parent, that I love dinky and that I am acting solely in her best interests. She praised me for giving dinky the foundation in reading. (I am not a big fan of praise, especially not when it is something every parent should be doing with their child.) She said I am doing everything I can and will put that across to the school. She is going to talk to the school this week and ask them what services they can pull in for Dinky and call me after I speak to the head teacher on Friday.

Then she will arrange a TAC (team around the child) for Dinky the week of or after the paed appointment so that we can work out how we are going to deal with the transition into year 1, and get some idea of what support can be put into place! I can’t even begin to describe how much the last 2 days have felt like a huge, win!! I feel vindicated, and feel like we can actually do something to help dinky. It is miserable so I don’t think we will be going to the park.

However tonight I think I will relax.

So, until tomorrow!

When I have steps and dinky has swimming, and she has end of the week teacher, which should be interesting!

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?