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.

What on earth prompted this?

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Dinky seems to go through phases and it has been really difficult to get any sense out the new school, however we get random days like today where it seems to all fall apart. Dinky has just had a big meltdown straight out of the classroom door.

Today also went to show just how much they misunderstand the intentions of a contact book and what content is supposed to go in it! (Although I have managed to get a meeting for Wednesday and intend to bring up the illogical way they do her contact book).

This morning Dinky did not want to go to school. She was hiding in the washing. I had to first make light of it, and then a challenge. We raced to get our shoes on, obviously she won.

On the way to school she was telling me that she didn’t love me anymore and that she wants to live with her grandma. I must admit I was hurt, I had forgotten about the way that she will say things to hurt me as part of her PDA. While I was hurt I didn’t react to it. In fact I didn’t react at all. I should have told her I wouldn’t want her to go and that I love her too much. Unfortunately I was too tired to think straight.

She said she didn’t want me to stay at school and do activities this morning. This is when I twigged the hurt in her voice. I picked her up and told her that I wanted to go in, that I need her to teach me maths this morning. (I am learning! Fridays is maths table!). She told me that she was sorry, she did love me really and she didn’t want to live with her grandma.

When we got in she happily went straight over to her teacher and told her that she was going to teach me maths today!

So we went into the class and we were weighing. We went on the table in the corner and had our own scales. We measured everything and she did quite well. She wouldn’t write the numbers and when she eventually showed me how clever she was by writing her numbers, they were barely legible and she got annoyed because they didn’t look like the numbers she wanted to write. I had to snatch the work off her to stop her from ripping it.

Dinky happily went to her classroom area and read a book. I told the teacher I was going and left.

At home I have been researching the Human brain. I have learnt a lot, it is a very interesting subject. However I do not want to say too much as I am reading a paper which is not published yet and I promised I would not share it with anyone, however it is very interesting and her description of PDA and explanation of its manifestations are the best I have read so far. She really does have a deep insight into the minds of these children. I think she is a very clever woman and I hope she manages to get her work published.

I must admit my own brain was aching as it was a lot more challenging than the previous research I had done with regard to autism and Asperger’s.

I left to go get Dinky from school. When I went into the classroom the end of the week teacher said to wait, that she needed a word.

Here we go again…

While we waited for more parents to come collect their offspring, I noticed Dinky had cut a hole in her jumper. Nice! Have they not heard of supervision, especially with scissors? Fantastic! not!
First of all she wanted me to sign the referral to the speech and language team. I was shocked that the senco had actually done something constructive! Meanwhile dinky had looked in her book bag to give me a letter and found that the same book was inside. She was not impressed at having the same book (she refused to read it last night) so she threw it on the floor and when the teacher looked at her, I said it was because she didn’t read it the day before. She then went off under the table and was generally on edge. While I was trying to do the form she was trying to get into the teachers cupboard and was taking things out. She was generally making a nuisance of herself. It seemed as if she did not know what she wanted or needed to do nor where to put herself.

When the class had almost emptied the teacher spoke to me about her behaviour today. She said that she was constantly pushing the boundaries. She was spitting, had cut her own jumper and blamed it on other children (when it was definitely her), going into places she wasn’t supposed to, ect.
In the contact book she has written

dinky has been a bit up and down today and needed thinking time in order to make the right choice.

She has been trying to get a negative response through her behaviour.

Dinky did enjoy music today though and used the claves.

Nothing about using scissors on her jumper, spitting or anything else she mentioned to me. Also it seems they have misunderstood Dinky, as she does not do what she does for a negative response. It doesn’t matter what response you give, until she has gotten whatever it is out of her system she will not stop. It is this type of misunderstanding that leads to incorrect handling which leads to more inappropriate behaviour.

Anyway, Dinky did not like the idea of the teacher writing about her in the book so spat on it. Spat at me and was kicking and hitting before going back under the table. Under the table she got a pair of scissors and tried cutting my shoe laces. I got the scissors off her, then she scribbled on the teachers clipboard in permanent marker. She went back in the teachers cupboard and broke a child’s model dinosaur.

 We finished our conversation and Dinky ran out of the classroom. I went out to get her but she wouldn’t come. So I said I was going she could come or she could stay. She screamed and got really upset and kicked me from behind, head butt my hip and was punching me in front of the deputy and the head teacher. Great!
She refused to come again so I said the same thing again and again she ran after me and hit me, this time she also spat at me.

I ignored it, and said, ‘ come on then sweetheart, lets get you home’. punched, kicked and spat at again this time about 3 feet away from her new head teacher.

It took more persuading to get her out of the gate. more violence.

We got to the shops and she wanted something to eat. I was not taking her into the shop in the mood she was in. The security guard in there makes her 10 times worse as he watches her meltdown despite her screaming she doesn’t like people looking at her. This led to her saying she wasn’t going anywhere. She pulled and pulled to get away, tried to take her wrist reins off, bit my hand and drew blood, kicked, punched, screamed, sat on the floor and spat at me. We had an audience which annoyed me. One kid, must have been about 10, stopped and asked if we could move! I asked him to just go round us. Then he stood next to her and watched! I asked him if he had nothing better to do than watch a little kid have a meltdown!

One of the TA’s came by after that to do her shopping with her son. She stood there and watched! I would have thought she would show some more consideration considering Dinky is one of the pupils in early years. Nope, stood there gossiping with the rest. To be fair on some people, they recognised dinky and walked straight past and tried to give me a small smile.

There was absolutely nothing I could do. She didn’t want me touching her and every time she said she was cuddling she bit my legs. I had to ignore her and hope it wasn’t too long before she managed to calm herself down.

Eventually, and I mean e-v-e-n-t-u-a-l-l-y she calmed down enough to move away from the crowd. She was screaming something about sun light and she didn’t want the sun in her face. She was hiding behind her book bag. She seemed really distressed by it. By the time we got out from under the roundabout she was getting more upset by the sun. So I took my coat off and put it over her so that the sun wasn’t on her and she walked home.
I didn’t say a word, and then she told me that she was upset today because her teacher didn’t believe her over something. She said that other children spat on their work and scribbled on their work and they were not supposed to and they said it was her, but her teacher didn’t believe her. To be fair it sounds like dinky, maybe she couldn’t remember doing it.or was sorry and didn’t want to get into trouble? I don’t know. I will bring it up on Wednesday as end of the week teacher isn’t in again until then.

When we got in dinky and I had a big hug. Dinky asked me where the blood on my hand had come from. I told her that when she was upset she bit me. She seemed genuinely upset about making me bleed. She snuggled into me for a whole minute. Since then she has been watching Netflix. Although just before dinner she realised that she left her seed at school. Luckily I had some grow your own cress kits from her trip to mcDonald’s with her special needs group a long while ago. So we set it up so she could watch it grow. Although she made it quite clear she wasn’t doing the writing or drawing it. So I said we would take pictures everyday of its growth and if she wants to write on it she can, if not she wont.

She is still watching Netflix. I am dreading the getting ready for bed!

I have no idea what has changed as the rest of the week she has been ok in school, just some minor issues about sitting on the carpet. Well, that is as far as I am aware.

We are not doing anything special tomorrow, but sunday we have been put down for a special needs activity day at the leisure centre.

I just hope Dinky feels better tomorrow…

Our morning and I decide to go to the key work session (edited version)

This morning while Dinky was watching Big Al be discovered and analysed again I decided that I would go to my key work session at 10am.

We got up and dinky was in full avoidance. She couldn’t possibly make her breakfast because I got the Tinkerbell bowl and there was no monkey spoon. So I got her a space bowl and a monkey spoon, she poured herself a small breakfast and then said she had a tummy ache so couldn’t eat it, which meant she might not be able to go to school! Then I caught her eating a biscuit in the kitchen! Cheeky monkey! She said she was hungry. I let her get on with it. I got her uniform which she approved of this morning, yet still refused to get in. She then took up position behind the sofa (which separates the living area from the dining area). Once she was dressed I needed to get some bits sorted. Dinky didn’t like me entering the dining area so threw the beanbag, then, the remote control car at me, followed by some books.

When it was time to leave she was ok. We walked to the school with her complaining about burning feet, tummy ache (which I assume is anxiety) and running out of energy.

At the school dinky wouldn’t give me her sunglasses and hid under the computer tables. I tried to get her out and then used the line “well, I am off to do the activity on the red table, I wonder what we are doing today?” Beginning of the week teacher cottoning on says “its a shame you are going on your own, it is a fun activity this morning on the red table”. Dinky does not like this  at all comes flying out from under the table head butts me and punches me twice. The teacher tries to get dinky to apologise but the more she asks, the less likely dinky is to do it. As if on cue, dinky runs off around the early years unit. I guide her carefully to her table. They are using children’s chopsticks to pick up beans and put them in the cups, they have to match the number on the front. Dinky likes this idea, no writing! So happily does the task, well, happily enough until she decides it would just be easier to use her hands!

I read her Goldilocks and the three bears and off I go!

Today I went to see my key worker. Why? In the end it was because she was expecting me to turn up and I don’t like letting people down. She is a very nice and bubbly woman, who, against the odds actually gets me a lot.

(I am editing from here, as I was tired and do not think it made much sense at all)

It was a very frustrating session for me, and in some respects for the key worker too.

I tend to spend a lot of time talking about dinky and how things are progressing. I tell her about the battles with the school and how things are going with the whole CAF process. While she understands why I spend time talking about dinky, as she is my life, she has to remind me that I am there for me.
This is all well and good but I don’t see how we can move forward for me at the moment.

There are things I can do and things I can not. I need to focus on what I can do. The CMHT have already made it quite clear that I am on my own. I don’t self harm, I don’t take illegal drugs and I am not a drinker, therefore with their limited budgets I am not a priority. I was sent to the Key worker to get me to socialise. I’m not a very sociable person, and I know it stems from my past. Which doesn’t make the key worker’s job any easier. Although she did manage to get me to agree to try the woodwork group on Mondays. We will see how it goes.

I guess the biggest thing for me moving forward is to deal with the issues from the past. The thing is I have always been discouraged from doing it the right way as they always worry it will be too much for me. I do not know how many times I have said that if they are waiting for my life to be rosey, or sweetness and light then they are in for a long wait. They normally laugh or shrug it off as me being dramatic or pessimistic. I call it realistic!

When I first went I became homeless thanks to the woman who took me in. I was 18 and they said it was too much living in the Foyer and dealing with the past. Then I went again at 21 when I had my flat and my job, but they could only offer 16 sessions. Which helped a little but was nowhere near enough. I tried again at 23, I was laughed at by the mental health team as they didn’t think I met the criteria for support. At 25 I tried again, then I became homeless again and it ‘wasn’t the right time’. It was when that ended that I was referred to the CMHT. Who again said I was not strong enough and it wasn’t a good time as we were in the hostel.

Now the key worker doesn’t think it is a good time because of all that is going on with Dinky. Which is all well and good. However, if Dinky has PDA (of which I am relatively certain), then my life is NEVER going to be simple. I also told her that I wouldn’t know how to deal with an easy life! It generally takes a few months for professionals or people working with me, to see just how hectic my life can be at times.

It makes me think of the Play Therapist that saw dinky. She said that it all seems like water off a ducks back. Which is true, most things are like water off a ducks back to me, living with my mother while horrible, has stood me in good stead for expecting the unexpected and dealing with it in a practical manner. I learnt how to block emotions coming into hard situations- except Dinky has turned me very soppy, to the point where, people used to challenge me to watch films and remark how I was more robot than human, however now mention Dinky and her difficulties and I well up! Even just thinking about her makes my heart beat  almost out of my chest!

Back to the point… It is very frustrating. I was visibly frustrated and the key worker said she understood that I was frustrated and she was frustrated also. We kept swinging round in circles. I was tired and I was not thinking properly.

I hate being that tense and wound up.

I came home and spoke to lovely mum as her lad was having a tough time with going into school and the school were being useless to the point of obstructive. We had a chat about the kids.

I wrote on here but it was very messy. And I do vow not to write when I am that tired or frustrated again.

I went to pick dinky up from school, I asked about the contact book. I am really, really fed up with the school and the contact book. Beginning of the week teacher said that there was nothing to report really. Dinky was happy to learn within an activity of her own choosing, but disappeared off during more structured time and needed to be spoken to about it. I told her that I need to know those things. I need to know for myself, so I know what to do and not to do with Dinky. I need to know for dinky so I can help her if she has had a tough day, or expect her to be tougher to deal with at home. Also for the paediatrician, this stuff is evidence to PDA, avoiding expectations, or not complying with the demand of sitting for carpet time.

She says “I can see that, I will start doing it”.

Arrrrrgggggggggggggghhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhh

I feel like banging my head off a brick wall! They were supposed to be doing it in the first place!!!!
Dinky was pulling the wrist reins, trying to go and the teacher in all her infinite wisdom says “I prefer to talk to you about it” I told her I don’t! It isn’t easy talking with Dinky there, I cant concentrate on what they are saying because she is constantly trying to escape.

We went to the park. Dinky was playing with two lads who were constantly shouting her name. It was nice to see these lads wanting to play with her. One of them was the boy who goes to nurture with her. The other is a lad she talks about a lot at home. Both seem to be rebels who are not bothered at all by her complete lack of ability to follow the rules. They seem quite happy to be there breaking them with her! I do not know if this is actually a good thing or bad thing. It is nice that they want to play with her but they are obviously encouraging her, and she is doing the same. it must be difficult for the teachers at times.

Dinky was saying she was hungry all the way home. She decided on eggy bread for dinner, which is fine as she had maccorni cheese and ham for lunch. She kept asking how long dinner would be.
I made her eggy bread. She didn’t eat it! She has done this a few time recently.

Bedtime was a struggle. She was pretending to be asleep on the sofa in an attempt to get out of getting ready for bed. So I have to try and dress a limp but giggling, pretending to be asleep child. She argues about wanting to read, and wanting to play with Simba, needing to watch the TV. I get everything close to hand thrown at me.

Eventually she goes to bed.

Despite my attempt to go to bed at a reasonable hour. I couldn’t sleep.

First day back after may half term

It never bodes well when I find dinky in my bed. Even less so to find her grinning at her galaxy tab watching Netflix at midnight.

I start to wonder if she actually slept in her own bed last night.

She asks me to hug her tight to keep her safe from dinosaurs. I tell her she is a lucky girl, that dinosaurs died lots and lots of years ago, there are no more left and that means that she couldn’t possibly be eaten by a dinosaur. However I still hug her tight as she doesn’t often ask for hugs, I ask and she climbs on my lap and digs her chin into my shoulder or chest while her arms lay at her side. It was amusing when she was very little as I would hold her and rub or pat her back while having a cuddle, and she would do the same to me. She did the same to anyone else while having a cuddle and still does it, if it is not a ‘sit-down-in-a-chair-hug’.

I was enjoying the hug but she said I was squishing her so I left it. She asked more questions about dinosaurs, especially meat eating dinosaurs. She has a new fascination with the bbc documentaries walking with dinosaurs. To be fair the ‘big Al’ one only got boring after the 5th time of watching it.

Dinky went to bed quite quickly, I on the other hand couldn’t sleep with all the teeth grinding. She seemed fast asleep, until I tried to leave the bed.

In the morning she was watching the land before time.
It finished at 7am so I let her have until then before getting ready for school. I put her breakfast and bowl on the side. I am not allowed to do anymore than this otherwise she wont eat it.

(Did I mention that she has more rules in this house than I do?)

I need to keep her clam as she is already on edge, and after yesterday I now have 5 bruises that were red bite marks the day before. I do not relish a repeat performance!

I go to get myself ready while she eats. When I come back she has written a note (even though she started forming letters at 3 years of age her writing is awful)

‘fromeyrs

to***** (she spells my name correctly)

iamfrom

ayblfront

wlwd

ilicyro

Howmitsluvly’

translated-

‘from earth (I think she ran out of space at the bottom of the A4 page)

To *****

I am from another world

I like your home

its lovely’

This is the child who wouldn’t write her name on the front page of the 20 individual characters I managed to get out of her for her homework over the past week. Yet will write to get out of making her breakfast and eating it! Typical!

I thank her for her letter and try to get her to make breakfast. After that it was another battle for her to get dressed. I grabbed her uniform, but the trousers I picked up were the ones she doesn’t like, the t-shirt didn’t have the school logo on, the jumper was acceptable. So we changed the uniform. However Dinky wanted to make a card for her teacher. I reminded her that we were now running late. She doesn’t like being late. So she got dressed. It was time to go, so she picked up 4 toys. I told her she was only allowed to take Simba. So she picked up her little Simba, then ran upstairs. She came back down with her large Simba (1 foot long and half a foot tall). I tell her that her teacher wouldn’t like her to bring the large one. This results in me being called stupid and weird. I get head butted and punched. DAMN IT!!! I manage to get the Simba off her, she grabs her drinks bottle which she launches at me. I barely get out the way in time, then it smashed on the floor. We didn’t have time for this. Dinky got even more angry.

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She stormed down the stairs and out of the front door and down the street. I grabbed my keys and ran after her. She was walking head butting my hip and humming down the road. I know better than to talk to her when she is like this.

She finally talks to me to tell me her feet are burning and she cant walk anymore. She shouts at me for not getting the bus. She tells me I am stupid.

When we get to school Dinky has a personality shift. She is all happy and bubbly. We sit at the activity table. She has to do writing, on the table are bunches of flowers, she has to colour the petals on the paper and write some descriptive words. The only thing she does do at school that she does at home is avoid demands. She coloured the petals, and wrote prpl (purple). I asked her what else she could think of, she said she didn’t know what else and was on edge so I didn’t push.

I read her a book and left.

I went to the office to let them know about dinky’s paediatrician appointment (they have to photocopy the letter before they authorise the time off), and to either talk to the senco or give her the letter along with the speech and language report. Wonders will never cease.. I actually managed to speak to the senco face to face! I gave her the report, she agreed to refer Dinky to the school team and even said she would get Dinky into the speech and language group at the school while we wait for the referral! She said it was good tat we have the paediatrician appointment. She seemed so much nicer than the first time I met her.

I am getting rather fed up with the school in general. Again I am told “she has been a good girl”. I hate this sentence. I hate it because I don’t know if it is truly accurate. Her contact book wasn’t done… yet again!

Dinky wanted to go to the park, I had no reason to object so we went. She did ok.

On the way home she was ok.

At home I let her watch Netflix and spin in circles for a while.

Now she is in her room… She isn’t asleep, but she is quiet and she is happy.

I am tired. I am trying to decide whether or not to go to my keyworking session tomorrow. My key worker is lovely, but I was sent there to socialise. I have nothing to say to the other people there. At the moment my life is taken up with Dinky and my battle to get her the right support. There are no goals for us to aim for in the key work sessions. The only thing I would be remotely interested in runs after school. The problem is I cant, at present, find a childminder who will take dinky with her current behavioural issues. They cant give her the care she needs after school as they have too many children.

I just don’t see the point anymore.

I’m fingers crossing for tomorrow! Hopefully it will be a better day!