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?

I’m off to bang my head on a brick wall…. (school issues… more school issues!)

It is getting to the point with the school where I just have to expect the most ignorant and irresponsible things to occur!

Take today and the last 2, no 3, actually 8 weeks.

Ok seriously today was the biggest joke.

This morning Dinky decides that again, she doesn’t want to go to school. So I get kicked and punched while she ‘thinks’. Her choice was a simple one.

  1. She stayed home which means she will not be allowed to go to the attendance treat, which also meant no tv, no tab, no ipod, no toys= no fun
  2. She goes to school and gets to go on the attendance treat at the end of term.

It was a battle for her to accept her choice of the attendance treat (dinky can not turn down a go on a bouncy castle!).
Once it was time to leave I could sense that we were going to go through the same thing we had for the past 2 weeks, so I decided to try and head her off. I said she could take her, now fully grown, cress into school today. She was holding it carefully so I managed to get out without being attacked!

 

On the way she said the usual

“my tummy hurts”, “my feet are burning”, “I have runned out of energy”, “I’m too tired to walk”.

God forbid that one day she does have a tummy ache, I would not believe her for a second!

When we got to school she was interrupting all the adults showing them her lovely fully grown cress. She paid no attention to them saying they were busy, she had the cress, they had to look at the cress! She was then messing about with the activity which involved scissors.

Once she was done she went back to end of the week teacher and was showing her the cress again, then she was showing the other children, she got them all to sit around her while she told them what she used to make them grow.

As I left I asked end of the week teacher if Dinky was allowed on the school trip. Apparently it would have been ok, up until last Thursday when Dinky was playing up… Contact book says

“”Dinky is still very wriggly on the carpet but has had a good day. She has been mixing all day with a new friend (smiley face)””

Hmmm, nothing in that to suggest anything out of the blue! Friday was majorly different. As I wrote on here she cut a hole in her school jumper, had spat and all sorts at school.

I asked if she meant Friday, she said, Thursday as well, and she couldn’t understand the trigger for the change, Friday is music and PE, and most kids find Friday harder as it is much more structured and different to their normal routine.

She said that I would have to speak to the head teacher about it as there is a risk element.

Basically Dinky is not being invited on the school trip.

Ok I thought, I would just go and see the head teacher as I am supposed to be meeting her now. So I left dinky teaching her class mates.

I went to the office to be told that the head wasn’t in this morning, but she would be in in the afternoon. I told them she said to come by today after I had dropped dinky off. She looked puzzled. I told her I was not happy and that I expected better from a head.

I went into town and got more ink for my printer along with some other supplies, and came home to read up on the disability discrimination act, SENCOP (Sen code of practice), and the equality act. All in regard to schools and children.

I then wrote a letter to the school saying that Dinky is classed as having a disability, hence having been awarded DLA, and that means that she should be protected by the disability discrimination act. I highlighted the relevant parts, and then wrote this at the end

“”This means that under the above legislation, reasonable adjustments must be made to ensure that Dinky is not discriminated against on the account of her disability. Her disability, while not yet defined by medical professional in terms of diagnosis, includes her behavioural issues.

The school can not say that I have not informed them, or tried to inform them, that Dinky has additional/special needs, which includes the nature of her disability.

Also, while caution is advisable, I might remind the school that Dinky has been on a number of successful trips, both with her previous school and with xxxx. (xxxx is a charity which runs groups for children with special/additional needs- disabilities). Granted she requires 1:1 on such occasions, but I do not see how this is not a “reasonable adjustment” that can be made for this trip to ensure that dinky is not discriminated against by being excluded.

Of course if the school has reasons which do not pertain to her disability, I would be happy to receive this in writing on headed paper and signed by either the Head teacher or other responsible member of the senior leadership team who are responsible for making these decisions.””

 

Hopefully this will mean that she will be accepted, if they have a loophole they can wiggle through then I will have to say that not allowing her to go will cause more issues because the staff, going on what was done previously, will talk about nothing but the trip for weeks leading up to and after the trip. Dinky found the whole thing rather upsetting and I think the only reason she wasn’t more upset is because I took her to the London eye, the aquarium and London Zoo. I will have to do something else with her to distract her from the fact that once again she will be excluded.

This will bring me nicely onto the point about her SEN status, as they can’t exclude her from 2 trips and then deny there is an issue. It doesn’t work that way.

 

So I printed off the letter and took it to the school, the receptionists face was a picture, as she scanned the letter… it was a mix of shock and disbelief!

I left to get dinky and was met by the head of early years. Dinky did not have a good day at school…

  • she refused to take part in learning activities today
  • she hid under the table during phonics
  • she messed about during PE and music
  • she hid during playtime, giving end of the week teacher the run around (which I had to try NOT to laugh at!)
  • She wouldn’t sit for carpet time
  • And finally… she punched a kid in the face for seemingly no reason

At which point Dinky piped up

“Yes, but I did write the boy a sorry letter.”

Hmmm.

So the head of early years wasn’t impressed and nor was end of the week teacher. To be fair I can handle all of the stuff accept her punching the kid in the face!

Then out of the blue the head teacher turned up! She asked if I could meet with me on Monday at 9am. During this Dinky asked if she could go to the park, and I said no because she punched a boy in the face. That was it… she was off. I had to chase her, then get her to go back in to get her book bag, she then went under the table and threw books at me. Then she tried to throw a chair at me. All because we were not going to the park!

I calmed her down by taking her to the shop and letting her choose what we were going to have for dinner and letting her pick the weekend lunch snacks.

Once home I realised that we had left Simba at school! Dinky was not happy, but she didn’t kick off. Actually she was much calmer this afternoon, which was very nice!

I think (obviously apart from punching other children which I do not condone and I feel terrible for the boy involved), that I much prefer it when she avoids all demands at school. It makes for a much nicer home child and now the school cant give me that superior judgement grin, because it is not a home handling issue, as she can be good, and now just as bad for them! I just hope she doesn’t hit the teachers, as I can guess that that will lead to her being permanently excluded!

 

So my meeting with the head teacher did not go ahead, but now I have more ammunition for Monday. It will be very interesting to see what they have to say.

So that is today… we shall see what the weekend brings… which is hopefully a lot better than this week!

When is an attachment disorder not an attachment disorder… When it is PDA!

 

Today, I had a brief conversation with the Head teacher of Dinky’s school.

She is just like the head of dinky’s old school, and it does not surprise me that they worked well together in a different county!

I was explaining the whole ‘experience’ of dinky starting at her school. At one point she cut me off….

HT: Is it just the two of you

Me: Yes, we did share a house with a friend, but it is the two of us.

HT: Well, I thought I would ask as from 0-3 children form attachments,  but if someone just disappeared out of her life it could cause an attachment disorder.

Me: I don’t think it is an attachment disorder.

She went on to say that she is going to get all her staff who come into contact with Dinky together and get a better understanding of what she is like in school. She said she would contact the first school and speak to her good friend. Also she wants to contact the CAF lead professional.

I am not sure what is going to happen but she is going to get back to me Friday.
I’m just so sick of everyone assuming that it is anything but what it probably is. Thankfully this ignorant and arrogant head teacher is not a medical professional and her opinion matters very little in terms of Dinky. I was shocked by her assumption and plan on putting her straight, I intend to write a letter to her explaining that while she is entitled to her opinion, even if it is after meeting me for all of 10 minutes and never having met Dinky. Also that dinky will be attending the autism spectrum clinic within the child development centre for assessment. This is the direction the medical professionals are going in and I would appreciate any other gems of unqualified assessment be kept to herself in future.

I understand that this may seem harsh but I will not allow someone to make out that I am to blame for dinky’s difficulties, when I finally get round to stopping blaming myself for how dinky is. Also if I let them walk all over me now they will continue to do so.

Dinky’s refusing to get ready to go to school is getting worse, and the meltdowns afterschool, while not as bad as Friday or last Sunday, are still happening and is now almost a daily occurrence. However today she was a pickle coming out of school as the teacher wanted to talk to me. She had had a bad day at school.

On the way home I let her pick dinner from the shop and she could pick a snack for the way home.

Once home I let her pick when dinner was, and how much she had. She span for a few minutes and then sat to watch Netflix. After dinner I sat down with her and asked her, when she was relatively calm, if she liked school. She said no, her reasons were:

  • I don’t like being told what to do
  • I don’t like carpet time because I want to sit on my own
  • I want to be the teacher
  • I don’t want to write- all we do is write, write, write

add that to her previous reasons from last week

  • My teachers don’t believe in me (maybe meant believes her?)
  • X wont play with me anymore
  • My teachers tell me not to worry but my brain does it

I must admit I did say to the teacher, after she said Dinky was harder to handle today, that I was less than impressed with the head, and that dinky is getting worse at home too. That dinky doesn’t want to go into school in the mornings and we had a massive meltdown last week because she realised it was back to school. I told her I don’t want to see my daughter suffer, she is 5 and in her first year of school, and I can see this is only going to get worse. I also confided that I am losing faith in their willingness to support her, she may be academically able but she needs support with the other side of schooling, the social and behavioural aspects.
The teacher agreed, she said that they will try to find a way forward starting with the meeting tomorrow. She will try and make sure that the SENCO is brought in properly, as now she is playing up more in class.

I just hate seeing her like this.

I have to think about the good things though… she still cracks me up on a daily basis!

We were walking home and dinky wanted to stroke a dog, so I let her. instead of saying goodbye she barked at the dog. I asked why she barked

 

“Because dogs don’t speak English!”

Gotta love her!

Tomorrow should be interesting with the meeting at school!

 

A phone call, and dinky is the one up the wall for a change!

This morning started with a lie in! Bliss! With my dad finally realising that screaming and shouting at her wont work, I didn’t have to jump straight out of bed to save her!

Not too long after I got up I received a phone call from someone I admire greatly, Jane Sherwin, author of the blog Pathological Demand Avoidance- an autistic spectrum disorder

(found on my blogs I follow or at http://shiggs55.wordpress.com/ and can normally be found replying to my posts!)

We discussed PDA and how it affected her daughter at dinky’s age. I listened and talked about dinky and school. Again I am told that dinky definitely has PDA. I should really get used to it and, although in my heart of hearts I know she does, it still comes as a little bit of a shock. It is that part of me that is waiting for the confirmation, the part that listens to the things from the school, the part that listens to other people who do not really know her. It is the part in me that always doubts myself.

We had a good natter, and I now have some things to look out for and some advice regarding getting her a statement.

When the call ended, I looked at the time… it was 11.30am!!!!

I had forgotten to print off the forms! Luckily my dad had raced dinky getting dressed. so she was ready to go. I had to make sure I was ready to go and filled in the forms, making sure I had her DLA award letter. I feel the need to constantly prove her entitlement to go on these things. Maybe it is my battling myself again. I feel that without the diagnosis that she isn’t entitled. She is however, so I take the letter.

My dad has dinky half way down the stairs while I grab a drink, some bribery tools, our bus passes and my keys and head out.
Dinky has my dad holding the wrist reins and we set off. I can sense that she is a little off, hopefully she will be ok when we get there.
My dad plays rock, paper, scissors with her on the bus. She starts using her baby two word sentences and he tells her to stop it, to use her words, that she is being silly. I have to whisper to him that it is her anxiety. He doesn’t really understand. I knew he didn’t read the PDA booklet! Honestly!

We get there and we have to wait at reception, the till has one of those sticky fuzzy things attached to it. So dinky is pulling my dad along by the wrist rein and jumps up to grab it saying “fuzzy, fuzzy”. Again my dad tells her off and is angry at her for using baby talk. I shoot him a look and he stops.

We go into register her for the afternoon and she gets all hyper and looks about ready to bolt. Once we get the paperwork done we head for the bouncy castle. She is straight on! She spends a lot of time on the bouncy castle. I tempt her into the trampoline. She gets on and the coach is trying to get her to jump on the +. Of course Dinky doesn’t. She jumps around the +, falls on it, runs around it, anything but jump on it. When the coach pushes, dinky runs to a different trampoline, and tries to play ‘catch me if you can!’ My dad starts to play it with her I on the other hand distract her down. I manage to get her off and she says she wants to try climbing.

Cool, I loved climbing as a kid. We took her over. I laughed at their from and told him that dinky wasn’t capable of ensuring she remains safe, she wasn’t capable of ensuring the safety of others and she certainly wouldn’t be able to minimise risk by being aware of her surroundings! Once that was out of the way they said we would have to wait. Dinky doesn’t do waiting. She is unable to contain herself. So my dad takes her on his shoulders for a short walk until they are ready. Even when they are ready she cant go on straight away. She puts the helmet on and then  runs around. I get her to one place until the instructor is ready for her. Once he is ready we make our way over. Dinky is pulling the ropes, and not paying the slightest bit of attention to the rules she s being told. The guy said “don’t touch the metal bits”. So she touched the nearest metal bit! Once ready to climb she does ok. That is until she is about 10 feet up and says she wants to come down. Then she agrees to give it another go. Again she doesn’t go up to the top and once down says she wants to go back to the bouncy castle.
So we go back.
She plays on the bouncy castle again, then we have a little go at football, followed by art.

Now dinky is not a big art lover, but if she is told she can do what she wants, she is away.

She put a very large blue t-shirt on and grabbed the small acrylic paint tubes. She squirts one after another on the page. I tell her no. At the rate she was going there would be none left! The guy supervising the art came over and told me not to worry, to let her do what ever felt right to her. So I left her to it. She squeezed all these tubes of paint out and mixed all the colours. The guy said she was very smart. He said “ASD?”. I get fed up of trying to explain that we are waiting so I just say yes. He says the squeezing is obviously a sensory thing and so is the feel of paint on her fingers, as she spreads the thick lines of paint over the page with her hands. Most of Dinky’s paintings are hand prints and paint soaked paper. This doesn’t really bother me too much. It is nice to know that she gets something from it.
The guy asks for my email, he said he was going to send me details of other sensory art sessions coming up. Cool! If dinky enjoys it, she is happy, I am happy.

More bouncing on the bouncy castle.

By the time it was time to go she seemed to be more relaxed.

On the way home, she played rock paper scissors again. Then my dad asked me why I said yes to ASD when I think Dinky has PDA. I looked at him and said, they are one in the same. He looked really puzzled.

He had another race with dinky at home after dinner, he challenged her to get ready for bed in the time it took to make his tea.

She was ready in 90 seconds!

he then said that she had better get to bed as she has school tomorrow. She went off on one. She said she didn’t want to go to bed, she said she wanted a snack and then started slamming the door to the living room. She was throwing things around and muttering things, but I couldn’t make out what she was saying. She got on the stairs and started spitting. I ignored it. After a few minutes of her jumping on the stairs I offered her a cuddle. She had a quick hug and then went up.

She came down every 15 minutes asking for one thing or another. Thankfully she went to sleep earlier than she had at any other time in the last week! Not by much, but she was asleep at 9.30pm while I was writing this.

I am not looking forward to the school run, and I plan on having a very serious chat about how they handle Dinky at school because she wasn’t like this at her old school.

I have to get this sorted, and soon.