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!

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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.

Special needs group and an interesting phone call

Yesterday Dinky went to her special needs group which was good for both of us. It has been a long week for both of us. I was right in thinking I packed too much into this week, it didn’t help that we had 3 sets of visitors too.

I get very confused around dinky and routines. Dinky seems to love routine and she needs it to refer to, so that she knows what we are doing and when. The only part she doesn’t like following, is bedtime. She doesn’t see the point in going to bed if she is not tired and the more I tell her it is bedtime the more she will use her avoidance tactics (normally pretending she is already asleep, therefore she cant hear, speak or move).

I do believe the amount of new people and new things she as done this week has had an averse effect on her. I guess I thought if she was busy she wouldn’t play up so much at home. Wrong. It just made her worse when she got home or after the guests left.

I had a very interesting conversation with someone I haven’t spoken to in a long while about dinky. (I had put a PDA aware symbol as my facebook profile pic and she responded). Well about dinky, PDA, and autism. My friend is a psychology student at university. She had recently studied the autism spectrum in depth as part of her degree and got very good marks for her Autism essay, yet never heard of PDA. Which is an all to familiar thing. I doubt many will, and I doubt it will get into the DSM or ICD because they are trying to reduce the sub categories of the autism spectrum and are instead using the term ‘ASD’ or ‘Autism Spectrum Disorder’.

Where dinky fits in I am not sure. PDA is definitely not is the new DSM V, and wont be, as no other subgroups will go in, if one as big as Asperger’s comes out. As for the ICD 10, it is not in there either. This means that she ‘probably’ wont get a stand alone diagnosis of PDA. Even then it depends on the beliefs of the clinician, in my case the paediatrician. If they don’t think PDA exists (despite the thousands of children and adults who all have a very similar presentation with various autistic traits), it is hard to say whether dinky would get a diagnosis of ASD.

I have heard some shocking stories about how ASD is interpreted by professionals/clinicians. It is so difficult to predict what will happen.

The subject of labels came up in our conversation. My friend doesn’t like a child labelled as they are then labelled for life. Which I understand. However I am not looking for a label. I am looking for answers, understanding and for Dinky to get the right support, especially at school. I have said if she doesn’t get a diagnosis, then she doesn’t.

Just like in the circus post with the badge, it would just be nice to have understanding, not blame and criticism. I would be able to completely ignore all whispers as ignorance, and cut off all interfering busy bodies with “unless your comment includes the cure for ASD/PDA don’t waste your breath!”

I am not happy with saying she has ASD/PDA until she gets a diagnosis, I allow her to wear the badge as it says ‘special needs’, which she does, in terms of her SEN status (emotional and behavioural difficulties) and her speech and language report.

I guess we are in limbo. Dinky can definitely not be described as a typical 5 year old. Yet we are waiting on the paediatrician appointment and however many follow up appointments we have to attend after to understand more.

It was a very interesting conversation. I was shocked that refusing to write is also a sign. But it is what it is right?

I had to break off the conversation in order to get dinky from her trip to see ‘All stars’ at the cinema.

I always have very short but interesting conversations with the leader of the group. Apparently dinky was fine. She made everyone laugh by teaching them how to eat the school way. I told her about the activities group at the leisure centre, she was shocked. She said dinky had run once but not far. She has never attacked or spat a member of staff. I said it was probably because they knew how to handle her. She was chuffed to be the only one dinky seems to behave for, and said she seemed to just have the touch!

Again dinky was more difficult on the way home. She wanted to go to the park but my dad was going to meet us at our house so we had to get back. She was pulling the wrist reins and then shouting that I was hurting her. After 15 minutes of her refusing to move and pulling the reins she decided that she would walk but she had to have a yoghurt and Netflix on the telly at home. Which was fine by me, so we walked home. She was picking arguments with me and holding my hand while head butting me in the hip.
My dad got held up, so it was just us for a while. She decided she was going to go under her table and line up some little toys, so I changed the channel. 20 minutes later she surfaced and got extremely angry with me. She was screaming so much I could barely understand what she was saying and she was throwing whatever came to hand at me. Including our ‘welcome to the nut house’ wooden sign (which bloody hurt). I lost my temper after that and told her to go let off steam in her room! To which she Slammed the door a few times and the one to her room. When my dad arrived she came down, got mad at him for suggesting that she eat her dinner and went back upstairs. She didn’t have dinner last night, because she wouldn’t go to the table to eat. I had to get her dressed for bed because she was so on edge. I told her she had to stay upstairs but she could stay up for a little while jumping in order to calm down.

Eventually the noise stopped upstairs and she went to sleep.

I then watched a film with my dad. He went home and I had another very long conversation on the phone.

I am shattered this morning. Dinky is very much on the edge, so I am not going to push anything today…