The posts have dried up- my apologies

I realise that Dinky and me has had more followers lately, welcome! 

I have to start by apologising for the lack of posts in the last few months. 

It seems that I am able to just about pull myself through very stressful times fighting all guns balzing, yet when the fighting is over I become exhausted and drive myself bonkers with the need to do what I do generally do on a larger scale, and that is to assess how I did. 

Well, I can tell you that I have successfully burnt some bridges that might have been helpful- thanks to my inability to understand the need to do things or say things behind the backs of others and not directly to their faces, and also my inability to not anger-email (a bit like drunk dialling) when having my own mini meltdowns due to the stress being too much for me to handle. To be honest the reaction says more about them then it does about me. 

I have also had some things occur that have knocked me sideways and I have seen an increase in my PTSD symptoms of late. Which doesn’t help. 

I seem to be flitting between wanting to go back to not really socialising (possibly part of the PTSD/anxiety as well as finding myself being excluded from the local generic autism groups anyway) to wanting to get the war paint on  and getting PDA awareness up in my area, especially with the Muppet paediatrician and the weekly emergence of  local parents identifying with the PDA profile in regards to their children. 

Dinky is doing well. She is obviously struggling with the fact that she has more demands now that she is at school, which unfortunately meant that the dog had to go as I don’t  have  anyone that can walk her in the evenings when Dinky won’t leave the house. However she seems really happy to go to school and is actually taking part a lot more than she was in mainstream. She has struggled the last few days at school, the link book says she has been reluctant to join in often refusing to attempt any lessons, however, she has enjoyed cooking and swimming. 

Today she asked what we were doing, as the timetable was blank, so I gave her choices, she chose films, rough sensory play, and her 2DS, over going out somewhere. We had a demand free day which ended with a meltdown free bath time to bedtime transition! 

Tomorrow cineworld cinemas are holding their autism friendly screenings, so I shall be taking Dinky to that. Then she is back at school again. 

I hope her costume comes in time for world book day next week. She is going as her favourite marvel avenger… Hulk. (Which always makes me laugh as my dad refers to her meltdowns as her turning into shehulk, but not going green, which would be more helpful! I definitely agree!)

I don’t think half term could have come at a better time, but what a week!

Dinky has really begun to struggle the last few days before they broke up from school.
She needed to be ‘held’ in school for her own, and others safety. She also refused to walk in school from her class to the taxi. Although I must admit I did find it quite funny when the TA said she wanted a piggyback to the taxi because her legs didn’t work!

Looking at it from Dinky’s point of view- to go to a new school full time after 11 months of being at home must be difficult.

They have really tried to go at her pace, but I think this need for a break after 5 full weeks was inevitable. Dinky doesn’t often regress, but she has over the past few days.

Last Saturday it was a struggle taking Dinky out with her new PA. As I have to supervise due to the DBS (police check) not being done, I went with them to sensory art. It was a new place but Dinky had met the people who run it before. However I didn’t account for it being in church grounds with most of the outside area being a cemetery! Dinky was scared and although I tried to carry her, at nearly 7 (just two more days to go!), she is getting rather heavy! So I manage to get her on my back and we go inside. Dinky took one look at the man who runs the sessions, he throws his arms out dramatically and booms “welcome”… Well, Dinky tried to leave,I stupidly blocked her way and got punched in the face, kicked me and still managed to escape.
I chased after her as she ran. I did manage get her to stop in a safe place. She wouldn’t talk, just growled. The PA found us and I explained what I did wrong, what I believed upset her and what I was going to do to resolve it.

Basically, the only thing I can do in that situation is wait for her to calm down.

She was almost calm when, out of nowhere, the guy came near and bellowed “it’s ok it’s new she did really well, when she is ready, bring her in.”

This made Dinky upset, and I knew that she found him too loud and imposing. So I spoke gently, and told her that I would make sure he didn’t talk to her until she was ready.
I asked the PA to go ask him not to talk to dinky, and I carried dinky back in, she ran straight over to the tent but got distracted by the sensory toys.
It ended up being a nice day out, and dinky had fun mixing paints and squishing clay.

As the week started, I had my driving test while Dinky was at her special needs group- I passed! Which is a huge relief and with a loan in my dads name, but with me paying the repayments, I have a car. Which is pretty awesome, I got dinky a proper padded high back car seat rather than the cheap booster we used on occasions where it was needed.

Then came Dinky’s 7th birthday! She had a great day with 2 of her cousins at sealife (London aquarium), once we finally got in, due to needing to pick up her new annual pass and there being problems with the system. Part way round Dinky decided she had enough of her special needs buggy and between my dad and I we were constantly chasing her, trying to stop her running through crowds and then trying to move her on from her 4 favourite areas- the turtles, sea horses, Nemo tank, and penguins.

Then came two reports. The first of which was following the telephone convo with the paediatrician a week or two back. In which she was going to help with a letter explaining the fact that PDA is not a behavioural problem and is not deliberate refusal to do things.
Well, the first bit under Dinky’s name and address didn’t bode well…


This is the Muppet that said it could come across that I am coercing professionals… Well it would help if they we actually professional in the first place… Getting the name of the condition right would be a start!
It utterly frustrates me that for an area that supposedly understands PDA that the paediatrician that diagnosed the condition doesn’t actually get it. Why do we live in a world where parents are more knowledgable than paediatricians when it comes to the ins and outs of a condition?

This creates a big problem, professionals don’t like informed parents because some will try to fit their child to a condition and this gives genuine parents who are right saying their child has a little known condition, a bad name.

I’ve mentioned before about the child who has gone through the whole spectrum in the 2 years I’ve known the mother, whose symptoms change to whomever’s child she was best friends with at the time. The mother said for a while her child showed PDA behaviour and when the newly trained doc said no, his symptoms disappeared. This is worrying, as I bet most parents in the PDA community would love for PDA to only last a few months! This is why genuine parents get a bad name, and less obvious/more high functioning neurological disorders are considered labels, as some professionals will take the parents word and diagnose.

This is why we want actual professionals who take their jobs seriously! Unfortunately I don’t think I’m going to be a fan of the paediatrician who wrote this letter as most of it describes a behavioural disorder and not a neurological one.

Then just as I was getting over that letter…

I got one from my complaint against SENAT regarding the length of time Dinky was out of school and how long it took to do the statement and get her a placement.

Of course the letter is steeped in ‘choice’. It was apparently my choice to take dinky out of her mainstream and home educate.

My response to the local ombudsmen would be that this is like saying it is a parents choice to give their child medication for a medical condition. It is a forced choice.
If I didn’t educate her, who was going to? Not them! What, Alternative provision, put a vulnerable child known to copy undesirable behaviours with older kids who have been permanently excluded from education for behavioural reasons? Or have 1 hour 15 minutes of education for 4 days a week in the home where Dinky would refuse and get the dog to jump up at the ‘teacher’ who would have no clue how to teach my child with ASD-PDA?
Or leave her in a school where they treat her like a naughty child and give her an untrained TA on a reduced timetable in a box room and exclude her on an almost weekly basis?

I don’t really see where my choice lay? As a parent my duty is to protect her, and the LEA need to provide a suitable education… None of those seem suitable- not even home ed because I am NOT a teacher, I am not qualified either! Then factor in 11 months out of school, which is far too long for any child whose parents are wishing to home educate.

I’m not saying those that home educate that are not qualified teachers are doing the wrong thing by their children, but in logical terms I feel my child is entitled to a suitable education by a qualified teacher and the LEA is duty bound to make it happen. It wasn’t a choice I made, and I made my feeling quite clear that I was NOT choosing home education.

So yes, I will be going to the local ombudsmen with this issue!

Conversation with the paediatrician last week

Dinky was supposed to have an appointment with the paediatrician on Friday (two days ago), but due to the time of the appointment she would have to miss the whole day at school just for half an hour of me telling the Paediatrician how things are going and any problems we are having. I always hate talking about Dinky in front of her, as the medical thing is all about what is ‘wrong’. In 30 minutes I couldn’t get through all the awesome stuff with Dinky, but they need to hear the ‘issues’ so they can ‘fix’ it. It is what doctors do.

I asked if Dinky ‘needed’ to be there, I don’t mind her having the day off school, but she has only just started a new school. They said she didn’t need to be there.

So she (the paed who diagnosed Dinky in June) was going to phone at the time of the appointment to save me a trip to the hospital.

At some point earlier in the week I realised that to do the new 1:1/PA’s DBS (police check), the people who deal with them for our county needed to see her ID. Of course they were going to come at 11 on the same day the Paed was supposed to phone at 10.30. What could go wrong?

Oh yes, of course the Paed phones at 10.55 and the 1:1 and the worker knock on my door one after the other.

So I ask the Paed to hold on a sec, show the two ladies into the living room to go through the DBS and sort ID out ect, and tell them I’m on the phone with the Paed.

This was the first time I had spoken to her since she diagnosed Dinks in June, I didn’t really know what to say… ‘Erm, cheers for seeing what I see, Dinky is still autistic since the last time you checked’… What I did need was a letter to say that Dinky’s demand avoidance wasn’t conscious choice, that she doesn’t choose to refuse to do things. This would help in a number of ways, DLA, for professionals that don’t quite get PDA, and just so that I have it in writing.
The conversation about this really got me afterwards, and I wish I didn’t have the other people in my house so that I could concentrate and really get my point across.

The Paed said that her diagnostic report explained that the demand avoidance is a condition, I replied with ‘yes, but not all professionals understand that, they still think it is a behavioural condition’. She said that some in the medical community do believe PDA is naughtiness. Cue audible gasp on my part! Ignorance still reigns!
I told her it didn’t come across in her letter that the demand avoidance was part of her autism.

Then she said something that really has got to me

‘It might come across that you are coercing professionals’

Me? Really? I should, have said ‘I’m sorry, am I asking you to write something that isn’t true? So how is it coercion if it is just asking for your explanation in writing? If maybe someone from the CDC actually turned up to one of Dinky’s TAC meetings, then it would have already been documented officially the medical point of view regarding Dinky’s demand avoidance/PDA/autism’
But instead I said ‘but I’m not though, I wish I could just use a reward system or punishment to get Dinky to do what is needed, but it doesn’t work like that. When professionals say ‘try this’ they show they don’t understand PDA, so it would be helpful to have something in writing.’

Not that it isn’t good enough, but it doesn’t fully question the fact that this wouldn’t be needed if they actually wrote it down properly in the first place, and that even suggesting others might think coercion is out of order! I haven’t coerced anyone! All I ask is that people who know what they are talking about, write down what they see so that I have the medical backing I lacked when I was coerced into moving to the other side of our large town, coerced into moving her schools, coerced into trying a parenting style I knew didn’t work for my little girl! More than any of this… dinky wouldn’t have been treated so badly by her last school if the doctors had written a letter explaining why it was a provisional diagnosis and how long the assessment process was… No, it was all left to me to do. And when there is lack of understanding about my daughters DIAGNOSED condition, I want the evidence to prove them wrong straight away.

In the end she agreed to send the letter, and she asked how dinky was getting on at school, and in general.

There wasn’t much else to be said, as before all the appointments were to assess for autism/PDA and now she has the diagnosis, there isn’t as much to say that hasn’t been said.

People often get upset or annoyed when their children are discharged after a diagnosis of ASD, but I wonder what the use of seeing a paediatrician every 6 months is. It has been 8 months since Dinky’s diagnosis and the follow up appointment was a phone call cut short by immediate issues.
The paediatrician said she would see dinky at the end of the summer holidays… So in 6 months, to review the melatonin and discuss any other medication if Dinky gets a diagnosis of ADHD as a co-morbid.

Dinky is doing ok at school, she is starting to attempt numeracy lessons, which is great, although slightly worrying when she is convinced 8 plus 5 is 15! She wasn’t eating at school (which is really unlike her!), she has reduced the things she will eat, so the school have made sure there is always something she will eat on the menu and they try her with new foods, and after 5 days-she did try something new on Friday, although she didn’t like it, she at least tried.

She is a little more avoidant at home recently. The poor dog is pretty much crossing her little legs whenever I have to do careful battle with Dinky over getting ready and actually walking the dog.
It is really hard work and the avoidance hasn’t been this bad in a while. The only thing we don’t get is school refusal, which is good as the taxi ‘escort’ is an older lady who, because Dinky was still getting her coat on when they arrived, said that SHE doesn’t allow her grandchildren to watch TV when getting dressed. Yeah because that will work! Can you imagine the type of thing she would say if dinky refused…

Dinky had her first session with her 1:1 yesterday, they got on really well, which is really good! They played in Dinky’s room, chilled out in her sensory den, watched power rangers, dinky played on her swing and they played with some of Dinky’s toys.

Dinky hasn’t ‘played’ in her room in a long time, yet right now she is up there playing with her toys!