PDA- autism’s ugly ducking

It is one thing for your child to be diagnosed with ASD- Autistic Spectrum Disorder… It is quite something else when your child’s ASD comes in the form of PDA. Add in the fact that Dinky is a girl and 6 and things get more tricky.

Just over the last few days and weeks I have really seen how different PDA is seen locally, however I am very sure I am not alone.

First problem is schooling- finding a school that actually understands PDA is hard enough, finding a special school that not only understands PDA AND takes children as young as 6- really, really hard. Finding a special school for a girl with PDA and 6… Well, we haven’t found one yet that truly understands. Some say they do, but then they say silly things like ‘isn’t PDA another name for ODD’ or ‘PDA that’s learnt behaviour’.

Then there is the complete LACK of understanding in the autism world.

Most people haven’t heard of PDA. The local autism charity, after I complained a few months ago, have HAD to take children with PDA, and therefore ran training courses for the staff.
I spoke to one of the staff, she fortunately wanted a head start and asked to borrow my copy of ‘understanding PDA in children by Phil Christie et al’ before the day training.
Afterwards she asked me some questions… The trainer said “no one in the UK has a diagnosis of PDA” – to which the person said ‘yes there is the person who lent me this book (showed them the book), her daughter was diagnosed last week with ASD-PDA.’
Apparently more things were completely misunderstood. Apparently people with PDA do not manipulate a situation and PDA is ‘fundamentally different to autism’- no PDA is a separate condition to classic autism, much like Asperger Syndrome is a separate condition to classic autism- yet ALL THREE are autistic spectrum disorders. They are fundamentally similar, but there are several things that differentiate PDA from the other autistic spectrum conditions- WHILE remaining one of them.

Parents of more traditionally autistic children ranging from non verbal classically autistic children up to children with high functioning autism/ Asperger Syndrome.

Apparently my child’s diagnosis means nothing because she can talk
“it’s not like x and y, dinky deliberately did x, even though I TOLD her not to”
Really? So when your kids do it, it’s ok because they are autistic but when dinky does it, must be the mother as dinky deliberately did it? I was unaware that the theory of mind aspect of autism suddenly resolves itself when they talk?!? Dinky has PDA you telling her not to is not going to work you might as well have told it to the brick wall. If you had ASKED me why she was ignoring you, I could have explained it and gone and tried to explain it myself.
However I had previously read a Facebook post by the wonderful ‘cat on a trampoline’ about autism and how when they get a thought in their head, no amount of persuasion, distraction, or anything else will stop them doing the thing that entered their heads nor repeating that process over and over.

For a person with 2 autistic children, you would think they would understand how these things work. The wife was lovely and had no issues with Dinky’s behaviour (apart from one issue with sharing, but once I explained what had happened, it was fine).

I went to a special needs evening tonight at the local soft play centre and I must admit I was hacked off for a number of reasons!

First of all, I had two kids to look after, one was my new friends son who dinky likes very much, and dinky. The lad has ASD, ADHD and a few other issues and can be quite a handful.
So the first thing to bug me was that another child’s 1:1 respite provider was too busy doing her paper work to see that this child was antagonising Dinky. I stepped in gently as he isn’t my child. Then she allows him, without asking me, to bring his dinner to our table and she carried on doing her thing. So I was now looking after 3 children, 2 with ASD and other complications and a child who was diagnosed with autistic traits but has little impulse control, and behaviour difficulties.
I had my hands full but apparently that didn’t come across enough!
She carried on ignoring him while he targeted dinky and after the third time I had to stop dinky punching him in the face, I had enough and went over to the respite worker, who was sat the furthest away from the play frame as she could get, and explained that the child she was supposed to be looking after was being rough and aggressive to several children, not to mention dinky but the last straw was him picking up a ride on toy and trying to hit dinky with it for no apparent reason.
I don’t have an issue with children with difficulties, however I believe if the worker was doing her job, his behaviour wouldn’t have escalated.

Then I spoke to a few parents.

One parent couldn’t believe dinky needed a special school ‘because she talks so well’ yes, about lego or the game she wants everyone to play, but how does that transfer to learning for a demand avoidant child?

Dinky was in a small car and was happy going round and round (when the lad from before wasn’t trying to pull her out of it, hit her with other toys or punch her through the ‘window). Another child wanted it.. Now, dinky is called dinky for a reason, she was at last height check, in the 25th percentile for height so shorter than the average 6 year old, another child cried because they wanted it. This child is the same height as dinky but in the 75th percentile height for a 4 year old- so is the same height as dinky. This 4 year old also has ASD and while academically on target has very little functional language although is no way considered non verbal. The parent looked at me like I was going to pull dinky out or ask dinky to get out because she is older and is more verbal.
No way! There is no way I would upset dinky when she has every right to be in the car. She would not understand that a child the same height was younger, even if they were smaller she probably still wouldn’t understand. Also it would be setting a bad example to her because she would use that as an example to kick bigger children off stuff.
Dinky was doing nothing wrong… The 4 year old was left to cry. The parent was left to berate me to other parents because i wouldn’t let her ‘more autistic’ child have what they wanted! Although I don’t see how the other child is ‘more autistic’- differently autistic yes, but dinky struggles a lot.

Another parent with a child with moderate autism who attends the local special school- who once said “dinky wouldn’t be eligible for the school”- came to talk about how rubbish our LEA are at amendments. She asked if I had a school yet… I said no. She said the special school should be able to take her. I was taken aback at the complete turn around! I said the lea wouldn’t place her there, then when she said they have children with worse behaviour problems I rather lost my temper! I told her the LEA said Dinky’s PDA was too severe for this school. She cut me off asking if the school themselves believe that. I told her that the school likened PDA to ODD and that is not the case, PDA is NOT like ODD. But we hadn’t been offered this special school anyway, but they don’t understand the condition. Dinky doesn’t have behavioural problems, she is autistic.

I’m fed up with people who do not understand PDA, trying to tell me what schools Dinky can go to.

Even last week or the week before, I had yet another discussion with the autism charity about dinky and again they showed a complete lack of knowledge about the actual impact of PDA on a child. She actually said “find a school to meet ‘most’ of Dinky’s needs”… Most? So which ones do I leave out? The biggest issue dinky has is PDA and the one need I can’t get met is PDA.
I don’t know why people assume I turned down the local special school… I wasn’t even offered it as an option for Dinky.

However I’m sure my dealings in the special needs and autism world would have been easier over the last 2 years, but the last 4 weeks especially, if dinky had been a more typically autistic boy. However if she had of been a boy she probably would have been diagnosed earlier and got more help in her first school.

There is good news. The diagnosis has meant I had more sway with the LEA and now ALL MENTION OF BESD HAS BEEN REMOVED!!! I’m just waiting for the final statement to come in the post. They have agreed to all of my amendments.
Dinky’s profile has been sent via the dynamic placement scheme (DPS), so hopefully some schools will come forward and I can go visit some soon.

I guess I’m just adjusting to life with a child with a hidden disability that is even shunned in the autism world, a world she is supposed to belong to… I have complained about the autism charity and said that they are discriminating against dinky on the grounds that she has PDA.

‘Multi agency’ meeting at the school!

I didn’t write this yesterday as it would have been a hate filled post ranting about the useless services and their complete and utter stupidity.
I can’t promise it still won’t be, however I can promise it will be less so than it would have been yesterday!

First of all, I’m not sure it is considered multi agency when most of the agencies do not bother to turn up!
We had apologies from the three medical professionals (consultant paed, OT and special needs health visitor), but nothing from EWO, SEN team, or alternative provision.

So we were left with myself, the social worker and THE Muppet.

I was surprised The Muppet was allowed to come and play, but I guess the deputy whose new title is ‘head of school’ has The Muppet’s job covered, so I am at a loss as to what her job actually involves nowadays.

We started of talking about Dinky’s diagnosis’, which was brilliant as The Muppet remained throughly silent throughout the discussion I was having with the social worker, as I described how good it was to finally get the diagnosis that we knew was coming and how hard it has been without it, especially when I told the school when she started on the 15th of April 2013 that Dinky was being assessed as the medical professional believed this was the problem she had. At least now I don’t have to watch Dinky suffer because people refuse to use the right strategies because we didn’t have the diagnosis in place, just a provisional one.

I made sure it was not entirely derogatory, while still making the point that the school had made a huge mistake and were wrong!

We discussed medication for the possible ADHD and the referral to CAMHS. Again The muppet remained silent while we discussed this. I half wished the social worker did as well. She was almost as bad as the paed- the pair of them come across as drug pushers.
I have agreed to trial a low dose of the medication methylphenidate, I also agree to trailing different brands names as they have slightly different properties before I stopped them, if I believed them to have too many side affects or felt they didn’t work.

We discussed sleep, and considering I didn’t actually sleep the night before the meeting due to a combination of me going to bed late and Dinky walking up at 1 am, it was something that seemed to be taken seriously by the social worker, but The Muppet seemed bored and was flicking through things on her phone- possibly emails… One has to check their hate mail every once in a while!

We then discussed social care.
Now this is a major sticking point for me as Dinky seems to fall short of the child disability team criteria yet her needs are too great to be met at CAF level. I refuse for be a part of the ‘think family’ initiative especially when our council sent a newsletter out to EVERY household with ‘Another £3.3 million for our Think Family programme to support the counties most troubled families’
Quite how many times I have to say Dinky has ASD/PDA not ASBO I’m not sure!

I also wasn’t impressed as The Muppet suddenly peaked in interest when the social worker said I have to work on the fact that I disengage with professionals and that I have to realise Dinky’s difficulties are life long and there will be many professionals in her life now forever and I won’t agree with all of them.
I held my hands up and agreed that I do disengage and sometimes I do so before I have actually realised I have done it. Although they have to be fair and understand that I haven’t disengaged totally with anyone of value to Dinky, and it has NEVER impacted negatively on her by their removal.
She went on so I bit back!
I told her I have only disengaged with certain members of school, not all of them after trying very hard to keep going despite their unwillingness to meet Dinky’s needs even when she did get a provisional diagnosis. I only want what is best for her, and I have had enough of fighting everybody, it is easier to walk away sometimes especially when I may say something they will regret.
I disengaged with the integrated services manager after she turned up at one TAC having never met dinky and said ‘why should the school put things into place for a provisional diagnosis’ I tell you why, because it would have helped EVERYONE involved, dinky, me and THEMSELVES. However they refused. Later on having only met me the once and never having met dinky she told social care during the child and family assessment my parenting was a concern. Funny that, her subordinate didn’t agree with that and said in a TAC meeting that I do not need parenting courses and my parenting is NOT a concern.
So yes I disengaged. I was very angry and she didn’t have a clue!

The social worker said “you wanted to disengage with me”
I said “yes.. Yes I did! Why? Because you came out to my house and despite Dinky being very obviously anxious, and hiding behind my chair, you STILL felt the need to talk to her, even after I asked you politely not to. I made that call after the bruises appeared from the bites I received while trying to help you get out of my house. To me it seemed easier to get a social worker willing to listen”

As I said I held my hands up. She said I needed to find someone to talk to about the services which upset me. Muppet!

Still The Muppet remained quiet. I liked this new side of her!

She also said that I needed to work on my mental health. I asked her how she suggested I go about that as I do not drink, self harm, smoke, do drugs or attempt suicide, I try and keep myself on a even kiln for Dinky so I am not deemed in great enough need by underfunded services.
She had no suggestions but said she was going to put it in the plan anyway!

(Even writing that I rolled my eyes…just as I did in the meeting!)

She moved onto the respite.
We get 9 hours a week while Dinky is not in school, which will be taken away in September. I did mention that dinky will not be going back to her special needs group in September due to the fact that she is unsettled there again because they keep changing the person who does the 1:1 and it has become a battle to get her there- not only that but it no longer serves it’s function as respite as by the time I get home I have 45 minutes before I collect her again. It is also only once a month, and due to them taking on ever more children they offer less and less support in the holidays now. (Whether that is just Dinky remains to be seen as one of the newest members to the group has been offered more sessions over the summer than Dinky who has attended for over a year).
So I said that reducing the hours but not taking it away would be better as that would be a lot of changes at once for Dinky as they are proposing she starts a new school at the same time as losing her 1:1.
The social worker said “change is inevitable and part of life, she has to learn to deal with it”. I was gobsmacked. In my head I was formulating several responses all at once, but by the time I worked out which one was actually appropriate to use, she had said that she was going to suggest another 4 weeks in two weeks time meaning we have 6 weeks and go from there, and she mentioned something about school holidays.

I asked what would happen regarding social care involvement and she said they would more than likely step down to a CAF. I knew this wasn’t the time to bring up the whole thing about a CAF not being enough while falling short of the CDT criteria.

Next up… Education.
Time to play ‘spot how many times they can blame the parent or try to get the parent to do something they shouldn’t have to!’
Ready?

Ok. So we discussed the last time Dinky was actually in eduction which was the 20 something of February. I went over again why I took her out, much to the disgust of The Muppet, who I was surprised didn’t respond.
We talked about the statement and how it is wrong. I found out that the amended proposed statement won’t lay unread as most senior staff members actually work right over the holidays.
We discussed provision… This is where it got interesting.

I said that I was finding it hard to find an independent school that caters for a 6 year old, let alone a 6 year old girl was difficult. The social worker said there must be schools out there… I said not on the ‘approved school list’, out of 55 EBD and autistic schools only 2 were within an hour car journey. I went to see the Helen Allison NAS school in Meopham, Kent, but ultimately an hour is still too far away and it took me 3 hours to get there by train. If something happened it would take me too long to get there. If Dinky was a bit older 10-11 maybe I would consider it, but it would be a long old day for a 6 year old with an hour travelling each way.
The Muppet said “why not move to Meopham?” She also during this period of conversation said “have you thought about residential”. To both I replied no! I should have said something, but I was thinking that I had already moved to be closer to a school and look how that turned out! Pfft!
We spoke about the local special school, I said that I was put off a lot by the fact that a) they just expected her to go into a classroom and that she couldn’t cope with that and spent the visit in a tent on the playground, they had no idea how to get her inside. B) the head teacher said “PDA that’s like ODD”- erm no, no it isn’t. C) it is already full so she can’t go anyway.

They both said that they were concerned that Dinky wouldn’t be in school in September because I keep writing off schools that don’t meet all her needs. It may come to it that I just have to pick what is best fit and go from there.
I told them I want her to go to school in September but that I am not prepared to send her somewhere which may result in complete school refusal and school failure. Children with PDA are at a high risk of complete school failure according to research which I submitted among my evidence for the statutory assessment.
They said that what I want may not be available and it has already been my choice to remove her from education. To which I retorted “that is not true! I had no choice!”
They asked about her current education. So I explained what happened with the alternative provision, to which The Muppet said she would have to chase them as she has Dinky down as dual registered and would have to justify why they were not fining me because I turned down PRU.
To which I replied, “you are not fining me because PRU is a larger nurture and you know what happened there despite having a wonderful person almost custom made to run a nurture group, Dinky did not cope there, and we have established and it is well documented that Dinky’s needs CAN NOT be met in this school. And that is not even a slur on the school but testament to Dinky’s level of need”.

I said that I was educating at home and The Muppet will agree with me that Dinky is not easy to teach, yet we have done some great work, and Dinky has done quite a bit which I am very proud of her for doing. We have been learning more about animals. To which the muppet said ‘well, she does like animals’.

It was said that I need to be a little more accommodating to schools as most schools won’t understand PDA and I can not discount them on this basis.

There was more, but simmering anger meant I can not recall the whole discussion.

All of this, will be put into a temporary child in need plan until the step down.

They made me feel wrong for disengaging with some ‘professionals’ but then looking back, is it any surprise? I seem to find rubbish ones who do not know how to do their jobs!

So it was pretty pointless as hardly anyone turned up, but it was amusing to get my two pence in regarding the way the school refused to meet Dinky’s needs!

The post diagnosis anticlimax

So it has been just over 3 weeks since dinky was diagnosed.
Her diagnostic report had 5 diagnosis on it…. I only went for one!

It is a surreal feeling.

I posted a couple of days after saying I didn’t feel any different. I do now.

Although I will admit it has been quite an anticlimax.
I spent tons of time researching autism, trying to find where Dinky fit on the spectrum. When I was told about PDA I had my lightbulb moment. But no one had heard of PDA. I had to learn everything about PDA and how it came about, I had to research autism and Aspergers to find out for myself how PDA fits in.
Disaster after disaster followed by fight after fight with education, health and social care. Brick wall after brick wall.
Stupid comment after stupid comment by muppets… My favourite being ‘we can ‘fix’ her’!
When I found a paediatrician who understood PDA, I still had to gather evidence, fight the school, and try to get her diagnostic appointment.
I had to make mental notes of autistic/PDA behaviour.
Everything had been a battle that some professionals who saw what I saw couldn’t understand how defensive I was as to them it was plain as day.
Medical practitioners were then almost falling over themselves to say that yes, dinky had PDA and was autistic. Didn’t make it easier with the school or the local autism charity who still wouldn’t do anything without the piece of paper.
A malicious call into social services from the school which thankfully backfired on them and actually got us some support… After a fight.
Out of school and granted a statement of SEN fighting and battling to get the amendments without the diagnosis. Fight fight fight, chase chase chase, argue the point over and over again that PDA is NOT a behavioural issue and is in fact autism.
Then came the diagnostic appointment… She has autistic spectrum disorder- Pathological demand avoidance.

Ok. I knew that was coming, I have fought for it.

“I think you should consider medicating”… That I wasn’t expecting.

The diagnostic letter and the OT report, I wasn’t expecting.

Now I go out and I still make mental notes of autistic behaviour and just realise that I don’t need to anymore, I don’t have to fight that battle anymore, but nothing has changed. I wasn’t expecting things to miraculously change, but I have just realised what an anti climax it is to realise that yes Dinky has her list of diagnoses from the CDC, but I’m still at full throttle… It is like walking up the stairs and thinking there is an extra step but there isn’t.

I’m still fighting on other fronts, but now they HAVE to listen because Dinky has what has been classed as ‘complex developmental difficulties’ and BESD and parenting have now been well and truly discounted. All health paperwork says we need lots of emotional and practical support.

This is when it hits me that this is it. Things are not going to change, dinky has a life long disability which will affect the rest of her life!

Just as predicted though Dinky hasn’t GROWN need since her diagnosis! She hasn’t suddenly become a child with ASD-PDA, significant attention-hyperactivity- impulsivity and concentration difficulties, sensory integration difficulties and sleep difficulties. (They listed ASD and PDA as two separate conditions but we all know better!)

I’m tired and I hope this makes sense… But it is now hitting me regarding the whole diagnosis, which I didn’t think it would.

Beginning to wonder…

If I should have my breakdown loudly or quietly?

I haven’t posted in a week or so because it has just been exhausting and frustrating getting through each day.

It seems that no one in the county council are actually bothered by the fact Dinky is not attending school as the new date I got for her amended statement is the 18th of July, the schools are given 15 days to reply, and therefore, considering schools are breaking up around the 23rd of July, they are not going to respond in time for an agreement to be made about Dinky going to school for September. Then because of the 6 week break, it looks as if we will not hear back from schools until September, meaning in all likelyhood Dinky will be going to school in October at the earliest, and even then transition has to be careful and done via starting part time initially.

The NAS school I went to see, well. I was a little surprised.
I love the ethos and the fact that they actually understand PDA is autism and that it is NOT another name for ODD!
But the building is run down, there is no sensory room, the outdoor play equipment doesn’t look suitable and the lack of technology is just a little surprising given that they are an independent special school charging LEAs for placements.

I could just about cope with the fact that the school isn’t what I envisioned, but the 3 hours it took me to get there because the trains were having an off week (they were at it on the Tuesday too), is just too much. If something happened and I couldn’t get there because our over priced and unreliable rail services are inadequate… I would hate myself!

I need to find something closer! There has to be schools which are stated as MLD or other schools which can take dinky! Why is it so hard to place a 6 year old autistic girl who is of average intelligence but can NOT cope in mainstream, even one with a unit attached?

So apart from the whole school thing doing my head in, I have made a new friend, but the friendship is not easy, she is lovely, but having a tough time. I find myself constantly not knowing what to say and just trying to listen to her without spouting out unhelpful things as the natural thing to do is to try and find solutions. I don’t have the solutions, I wish I did, that way I could help dinky too. I just come away feeling even more drained.

The 1:1 respite is slow to get off the ground. The first week we were awarded it, the lady was ill. So we carried it over and were going to split the 9 hours between the following 2 weeks. So, dinky had 8 hours on the Monday last week, followed by 5 hours on the Wednesday, and then 7 hours on Monday this week, however the other 7 hours for today… She text me at 2.35am to say she thinks she may be coming down with something.
So I have barely slept, as after dinky finally went to sleep at 11pm, I went down at midnight and then couldn’t sleep after that text.
How on earth was I supposed to break it to dinky that she wasn’t going to chessington with her 1:1?
Well at 5 am, I can tell you it DID NOT go down very well with her at all! My shins should be yet another shade of purple by this evening, as apparently it is MY fault that the 1:1 is ill… I’ll add that to my list of superhuman things I am at fault for then!

Dinky is currently having some bouncy time on her trampette in her room… I have had to explain after several incicidents trying to do seat drops that this trampette is just not big enough for things like that!

I had been taking Dinky to the local autism charity’s football thing on a Saturday, as predicted Dinky has declared all the big people there ‘bossy pants’ and refuses to go on the principle that she will a) not be told what to do, and b) that they won’t do as she wants and do ‘arsenal vs Chelsea’.
Although she has said she wants to watch a football match on the main pitch.

Dinky has been learning about the human body and has a new iPad app, she currently enjoys stinging it with wasps and tickling it with feathers to see the message going through the nervous system to the brain… She enjoys taking all the bones out, so the skin all flops to the floor… And over feeding it until it vomits and moving the gas through the large intestine and out of the rectum!
I’m not exactly sure that was the intended method to learn, but she is learning none the less!

I went to a listening session with the OTs and mentioned the fact that Dinky’s statement has been delayed TWICE because of late OT reports, and the second one was late because no one thought to do a home assessment instead of a school one after I took her out until I suggested it!

Back to the statement, which should have been finished nearly 6 weeks ago! It seems that although the law states they have 26 weeks, there seems to be very little information on how to complain about the fact that the local authority are obviously disregarding this current piece of legislation!

Oh and Dinky’s child in need meeting is going to be held at the old school! That should be very very interesting, and I will definitely be making my point very clear in regard to how badly they messed up, and I will ask why they haven’t responded to my apology request. This might sound rather childish or heavy handed, but even now their input is causing delays to Dinky’s education!

The only thing that slightly cheered me up today was the fact that redbull was on offer!

Sorry it is more of a tired rant, but I can’t write anything other than that at the moment…