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.

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The penny drops and dinky is very anxious today…

Those of you who may have read Sunday’s post will know that my Dad was more than useless during Dinky’s meltdown at the end of half term.

I think the biggest problems were that:

  1. He had never seen her attack me like that. He had seen her refuse to budge from outside the local shops, but not attacking like she did.
  2. He was sceptical of PDA, and to be fair I don’t blame him really, it would be nice for him to have faith in me and my judgement. But PDA isn’t widely recognised. He also didn’t take the time to read the info I gave him.
  3. He didn’t want to believe there was an issue.

Today he came over in the afternoon, Dinky was in her room watching Netflix and playing (jumping on her bed). Every time she came down it seemed she was easy to ‘set off’. My dad actually reacted differently and helped her understand something she had done rather than punish her!

It was quite funny actually.

My dad had brought a pack of 3 chocolates, 1 for each of us. Dinky had come down to greet him, grabbed 2 packets and run off upstairs. By the time we’d realised what she had done it was too late. She had eaten both packets! My dad said ” you have eaten mummy’s buttons”. She didn’t look bothered by what he had said.

He asked her to come down and he showed her the packet. He showed her that there were supposed to be 3 in there. He asked her to count how many people were in the room. She counted 3. So how many were each of us going to have? 1…. Then it hit her that she had taken mine, which meant I didn’t have any. (I wasn’t bothered, but it is a good lesson for her to learn). I put on my best sad face, because unless you genuinely look sad or are bleeding you can’t be upset or hurt, according to Dinky. She apologised… then made us both laugh by shrugging her shoulders and saying that we should both share my dad’s buttons! Definitely not daft, and very much a dinky thing to say!

We spent some time talking about dinky. I read him the reply from Jane on my last blog post. (thankfully he is a technophobe so wont be reading this!). It really hit home having someone else say that that is exactly how their PDA daughter was at 5. It confirms I am not crazy.

Dinky spent much of today in her room. She didn’t want to be around anyone. She came down just before dinner and wanted to play angry birds frustration with my dad. It seems to be one of those things that she only does with him. I love listening to them play it, Dinky always manages to win. She seems so happy when she is sending one of his pieces home and she is getting much, much better at taking her turn, and not rushing or banging the pieces. Of course she still does it sometimes, but she realises that it actually ruins the game. I watched as she won the game. I don’t think she should win as much as she does as she was calling him a loser and this is how you create bad losers. Problem is she is too good for my dad and despite him trying he cant seem to win!

I must say though she isn’t like that with me. If she wins she normally shares her victory with me. She also shares my glory when it comes to games of FIFA 13 between my dad and I.

She made me laugh again before bed. My dad went out and she was sitting on the back of the sofa. I was asking her something and she said

“You are testing my patience. My patience does not like to be tested!”

I was gobsmacked! She said she was practising patience. I have no idea what that was about.

It was not until after her bath and she got ready for bed that I worked out what was making her more anxious. She was upstairs watching Netflix on her tablet before bed, or so we thought she was….

She came down with something she had written for my dad. It was the worst piece of writing I had seen from her. I couldn’t make out more than ‘from dinky’ at the end. When she came down a second time I asked her what she had meant. She said that she didn’t want to go to activities at the leisure centre tomorrow. She said there were better things to do at home.

It took a minute for it to click in my head. Of course. Last time I said she was going to activities at the leisure centre I dropped her off and left her, she got the 3 incident reports in the 4 hours she was there. It must have been miserable for her. Poor bubba. So I went upstairs and sat with her on her bed. I told her that it wasn’t the same thing as last time. This is for special kids, and mummy and granddad are staying with her, we were not going to leave. It was going to be something we could do together as a family. She seemed a little happier but still not great. She ended up staying up until 9.30pm.

Sometimes I forget just how much anxiety going out can cause. I don’t want to end up being stuck in for the whole summer holidays with her so I need to reassure her that I wont leave her apart from the trips with her special needs groups which she likes going to.

I have decided to only do the afternoon session, and I have pre warned my dad that any inkling that she is not having fun, or is finding it hard and we are leaving. I feel bad enough making her go to a school that isn’t supporting her needs, without inflicting weekend anxiety on her.
I think for the time being we will have to limit what we do on a weekend so she can recharge from school.

 

These next few weeks are going to be very important for Dinky. I have to make sure I do it all right… and it all starts with the meeting with her teachers next week, then the speech and language team, then the paediatrician, the only thing is she wont understand just how important it all is.

 

I hope I haven’t built up all this anxiety for tomorrow. If she doesn’t want to go I am not going to persuade her. I guess I will only know tomorrow. This is such a massive learning curve, trial and error. The problem is every error has an impact on my baby girl.

 

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…

Concerns over Paediatrician appointment in July

I am very concerned about the paediatrician appointment on the 9th of July. Not necessarily for the reasons some may think.

It is difficult as there are so many reasons why her difficulties may be overlooked.

  • Firstly girls on the autism spectrum are often misdiagnosed or not diagnosed as they present differently to their male counterparts, as generally girls are better in their interactions and can mimic social situations better in order to fit in.
  • The fact that the ASD I believe Dinky has is PDA, which is not widely recognised
  • That I seem to get prejudged very quickly by doctors and have been my entire adult life (I look young, I do not dress very ‘motherly’, and if they ask about my mental health or my history I become overlooked as that poor abused kid with mental health problems)

I guess I am not looking forward to having to fight a professional just to take dinky seriously.

When I first realised there might be an issue I tried very hard to prove dinky wasn’t on the autism spectrum. First of all I knew a lad who had recently been diagnosed with ASD. I, at the time, didn’t believe there was anything majorly different between him and Dinky. I actually thought the first paediatrician was right when they said he didn’t have ASD, as he and dinky were alike in many ways. His mum actually got rather annoyed with me on a number of occasions as I said Dinky did a number of the same things. However I had to apologise as I used that to mean that there was nothing different about her son, rather than acknowledging that this could mean that there was something different about Dinky (however this still would not have been enough to save our friendship as she believes that her son is autistic and it is woe is her, other people can not possibly go through what she did in having a high functioning child with autism). Looking back I should have seen it then.

My other problem was I did not know enough about Autism. My only real experience has been 2 boys with classic/Kanner’s autism, and there was a girl in my 6th form college with Asperger’s. I wasn’t aware of the broadness of the autism spectrum. I had certainly never heard of PDA.

I went to the library and got out books on the autism and Asperger’s. I read and read and read! The more I read the more I found it related very much boys. I looked online in between my reading. I came across something on autism.org about women and girls on the spectrum. This made so much sense. The penny dropped, but something was still amiss. Dinky was very sociable and not just in the imitation of others. It was then that I was introduced to PDA. BANG! In that instant all the jigsaw pieces fell together.
Now I am realising that the Paediatricians and other clinicians are more used to the male presentation, and the more usual presentations of autism. How on earth am I going to show that the research has been done and girls with less severe presentations do exist, and that PDA not only exists, but can be seen in Dinky if they look hard enough?

I feel it is a mammoth task. One that is hard for me to take on because I still look young, although I have thought about buying an outfit that is more ‘motherly’ as I still think turning up in jeans, a hoody and air force 1’s, may just take the edge away from the point I am trying to put across. Comfort is a luxury I can not afford if it is at the expense of Dinky. I may have to research more on this.

I can’t work out if dinky is now showing more autistic traits just recently, or if I was just in the midst of a turbulent time and didn’t see it, or that I was just so ignorant of autism and its different manifestations, that I didn’t realise what it was she was doing was not typical behaviour.

Maybe it is a combination of all 3. Maybe now that I let Dinky have more control and things are slightly easier outside if the trigger times (such as getting ready for school and bedtime), she is spending less time being outwardly PDA and is showing more of the autistic side of the condition.

I just want what is best for Dinky. I have found that PDA strategies work best for her, so we need everyone else to get on board and the only way to do that, is to make sure that we come away with the right diagnosis.

I have mentioned this before, but it is the not knowing what they believe exists and doesn’t that is the most difficult. If dinky were a boy and presented in a typical high functioning ASD way then it would not be a major worry. I would be happy to allow the Paediatrician to make their own judgement call, sit back and worry only for how my little one gets on at the appointment. But bear in mind that males with a typical presentation are picked up a lot quicker by schools.
This can be seen with the lad that is one year older than Dinky who was recently diagnosed with HF-ASD. They went to the same school and had the same senco, however you couldn’t have more different approaches to how they were treated.

Boy-

Had a major life disturbance in his father walking out and letting him down regularly

Dinky-

Had a major life disturbance in the change of scenery in form of housing and missed the person we lived with

Boy- intervention from school-

None

Dinky-intervention from school-

Play therapy

Boy- surface autistic traits (from what his mother said to me and from knowing him for 3 years)

Not bothered about socialising, unable to share, had very few friends, inappropriate interactions with adults, lack of understanding of emotions, lack of interest in other people’s interests, clumsy, seemed at times to be unaware of people around him, easily absorbed in one activity, strong need for routine, lack of safety awareness, behind in verbal communication, refusal to do school work, behavioural outbursts, sensory issues. (However he displayed these in a more obvious way)

Dinky- surface autistic traits

Inappropriate interaction with (peers if you look properly and) adults, lack of safety awareness, running when stressed, behind in verbal communication, refusal to do school work, behavioural outbursts, sensory issues. (not very obvious apart from the swinging from adults arms or hugging people she doesn’t know, refusal to do work resulted in the most severe behavioural outbursts).

Boy- intervention from school-

16 hours 1:1 TA input a week                 His own behavioural system

Educational Psychologist                         Contact book (filled in properly, in full EVERYDAY)

Referral to paediatrician                          Speech and language input

Visual timetable just for him                   Social group

Dinky- Intervention from school

Play therapy                                    contact book (laughable content)

Own behavioural system

So some very similar issues that were not picked up or given intervention by the same school. Obviously all children with ASD are different, the boy presented as more typical HF-ASD. It is just amazing how differently boys and girls are treated. Dinky’s behavioural issues were put down to being an emotional girl who was too young to express her emotions in the right way. The boy’s behavioural issues were looked into, and his social interaction was looked at more, and he had all the intervention he needed.

With his TA he produced lots of work, and quality work. He learned loads and his behavioural outbursts decreased.

Dinky was pressured into doing more because she was seen as awkward and defiant which meant she had done very little work in the 2 terms she was there. Being pressured exasperated her behavioural issues and has made it much worse and made her less likely to do work.

In fact the Senco said once “It is not like she is autistic” (If we get any type of ASD diagnosis I will be sending a copy of it to her first school!)

Seeing as the first paediatrician said the boy was unlikely to have ASD, what will they make of dinky? It is the same child development centre, and I am worried.

I will be researching a lot more, and logging behaviour more and more over the next month. I intend to prove beyond a shadow of a doubt that Dinky needs a diagnosis which encompasses all her difficulties and spells out her needs.