Took diagnosis letter to The Muppet, NHS OT home visit, SEN team call and private OT open day.. all by 1pm!

so it has been just over 24 hours since the diagnosis and it was a long hard fight. Not for any other reason than the school making things hard and having to try and find someone who understood PDA. I had talks with PALS, the head of paediatrics and the head of the CDC. Dinky was the pathfinder for PDA for our CDC route as they needed to stop CAMHS vs CDC hot potato game.  That CDC had not diagnosed a child from beginning to end (One paediatrician had added PDA to other children’s ASD diagnosis). So the structure of the assessment had to be looked at, and the official line had to be drawn in regards to where they decide PDA sits on the spectrum, if it does at all.

I have read some literature about getting an ASD diagnosis, they all say prepare for the news and you may feel this or that… I don’t know whether I was expecting it, or the fact that I have been hectically busy and haven’t taken stock, but nothing has changed. How I feel about Dinky hasn’t changed, how I feel about her having PDA hasn’t changed- the only thing that has changed is that now I don’t have to say ‘provisional diagnosis’ or ‘they think she has PDA’, I can say full out… Dinky has an ASD called PDA!

Today was hectic!

After we had taken the dog for a walk and before the NHS OT came out to do her assessment, I took the diagnosis letter from yesterday to the school!

It must have been fate- there was The Muppet (Dinky’s old head teacher)  on a phone call right in front of me!

Once she was off the phone I said “I have something for you”, her face turned sideways, kind of like the way our dog does it when I say ‘whos a good doggy?’ hahaha

I handed over the envelope and said “here is Dinky’s OFFICIAL autism diagnosis of PDA and a covering letter”

Her face dropped, she said “thank you” in a fake polite voice. but she couldn’t hide the look on her face!

I wish I could have been there to see the look on her face to see the covering letter!

Please find attached Dinky’s diagnosis letter, confirming
AUTISTIC SPECTRUM DISORDER- PATHOLOGICAL DEMAND AVOIDANCE.
This is what I have been TRYING to tell you from day one at the school. Your refusal to listen to this has led to a complete breakdown between myself and the school, and has led to Dinky, currently. not being in education at all.
This is why I have been so ‘difficult to work with’, because I KNOW my daughter.
I believe that a written apology for failing my daughter in the 2.5 terms she attended the school is the minimum that should be offered by the senior leadership team! Especially given the refusal to engage with me after her provisional diagnosis.

Yours sincerely,

I wont get the apology, I have more chances of pigs flying or becoming a millionaire over night… but she must have been so annoyed by the thought of the need to apologise, or my pointing out how much they have failed Dinky!

I should have been more grown up about it, but hell, it made me feel better… vindicated.. I let her know that as much as she tried to put me down, calling social services, lying about Dinky’s struggle in school, and flat out lying to the MP… SHE didn’t get one over on me! I am strong and I wont take her crap!

I have also written a letter to the head of the old school who said “X school will be better at dealing with families like yours” whose senco also didn’t put anything in place for Dinky as she said “It is not like she is autistic”. I haven’t asked her for an apology but have said that she needs to learn from this as she has made a judgement and had no idea what she was talking about, and actually her advice has really made our lives more difficult.

Then the NHS OT came out. She came to assess Dinky as part of her statement (although technically the statement should have been written by now!). Dinky was jumping all over her, and was basically just being a bit of a pickle. We managed to get Dinky to draw a picture of a dinosaur so that she could see dinky’s fine motor skills, she checked her muscle tone in her hands and engaged Dinky in playdoh. I showed her videos while Dinky was smacking me for daring to have taken loads of videos without her knowledge. But the OT said they were helpful, as I had ones of her noise sensitivity, loads of spinning videos, one of an attempt at using scissors, rocking, hand flapping, sniffing things, chewing her tiger toys ect. I showed her the ed psych report which states Dinky displayed sensory seeking behaviour of heavy persistent rocking and licking door handles.

We discussed other things- and she said she would try to do the report as quickly as possible. She said she would send me information on looped scissors without holes in, exercises with pre writing hand eye co-ordination, fine motor skills and compression vests.

The OT said Dinky was definitely a sensory seeker, but with sound and bright light sensitivities.

She asked if Dinky was ALWAYS this energetic… I said yes, we are waiting for the outcome of the ADHD assessment as there is some PDA-ADHD crossover in attention difficulty. She said that it made sense, and that some of the problems dinky has with writing might be due to lack of practice due to her avoidance, lack of attention due to the possible ADHD or anxiety with the ASD/PDA. It still needs to be worked on but there isn’t a clear reason.

Next up….

Call SEN team.

I phoned the sen team and let them know dinky now has a DIAGNOSIS of ASD-PDA and that they have taken ‘Severe behavioural difficulties’ off the list of issues, and I would appreciate it if they could begin the process of amending the primary need to Communication rather than BESD! She was quite good if I am honest. She said if I could copy it and send it to her that she would be happy to use that to begin with while they wait for the report, and then she would call me at the end of the week and discuss a timeline for the completion of the statement as they are aware that they are quite a way over the 26 weeks they have to do it in! She did say that having the official diagnosis does help to clarify the needs, and that this will be done as quickly as possible.

DONE!

Next…

Private OT open day!

Wow! Dinky absolutely LOVED the sensory integration therapy room… she enjoyed the lycra squeeze tunnel, the bolster swing, the trolley down the ramp, the trampoline, the platform swing, the theraputty… basically a sensory seekers DREAM!

(she also enjoyed the chocolate brownies they had laid out 🙂 she was having a whale of a time!)

I am seriously considering having a private assessment, but couldn’t afford a regular £70 for 45 minutes of sensory integration therapy.

Although I am considering the body sox!

We got back at 1pm!

From then on it was basically a case of playing a few games with Dinky, then getting my dad’s ticket for the London aquarium on Thursday, dinner and walking the dog!

Dinky is currently bashing about in her room… melatonin time… hopefully!

Advertisements

Dinky has an OFFICIAL diagnosis of ‘Autistic Spectrum Disorder- Pathological Demand Avoidance Disorder (PDA)’

Today was the big day! At 2pm I would be in the room with the diagnosing Paediatrician while the speech and language therapist tried (once again) to do some of the standardised speech and language assessments.

I asked the person who has agreed to PA for Dinky (if I can sort out the mess with social services), if she would come with us today in order to get this done as the letter said to allow 1 and a half hours for the appointment. She agreed.

So this morning I had been adding the odd purposeful direct demand in order to make sure that Dinky is at the level of showing yet another new doctor EXACTLY what PDA is! This was the last appointment I would have to do this for.

After lunch Dinky was at the level of verging on super avoidant and was anxious. I didn’t have to do much, she wasn’t keen on the whole idea of going to the hospital for me to talk to the doctor and for her to play with the ladies.

We got a lift from the PA, and got there in plenty of time. The Paediatrician was brilliant! She greeted Dinky and then went off to do something and then came back and told dinky there were going to be 2 rooms…

  1. The playing/fun room
  2. The chatterbox room

Dinky obviously chose the playing fun room! So I went off into the chatterbox room with the paediatrician.

We went through the Extreme demand avoidance- Questionnaire in a chat format. Dinky scored very highly for extreme demand avoidance, they still had the ones I had professionals fill out in October 2013, which also scored highly.

Then we did the short version of the 3Di. I was asked various questions in relation to the ICD-10/ DSM-IV criteria for autistic spectrum disorder. We went through all the different areas and discussed Dinky in detail.

There was lots of banging coming from the playing fun room! Dinky also came in a few times, she wanted her bubbles, she found a game and asked what it was, then she came in for something else. The SaLT came in to hurry us up, as dinky had, had enough by this point. We got through it and the visits from Dinky just showed the Paediatrician how dinky struggles. She picked up on the fact that Dinky barely looked at her, and when Dinky asked about the game- the paed said she didn’t wait for an answer and seemed to be distracted within herself. I showed her videos of Dinky spinning in all different scenarios and she seemed to take note of how she was spinning and that she was totally in her own world.

We discussed the good bits too. Then I had to leave and the SaLT and the Paed went into the chatterbox room and I nervously waited outside with Dinky and the PA. 30 minutes went past, and I was called in for feedback. Dinky seemed to have had fun and was playing with water. the Paed said dinky was cute and dinky gave her a hug, which was odd, but the Paed seemed unfazed.

Dinky definitely fulfilled the criteria for PDA.

On the 3Di Dinky came out as moderately autistic, which surprised me a little.

Apparently the school questionnaire came back negative for ASD, but they were aware the school had only known her 4 weeks at the time they filled it in and the information was old. The SaLT and the Paed said not to worry about it as it doesn’t change the outcome.

The SaLT’s assessment and observations came back as ASD- PDA

And the Paediatricians observations in clinic (all three paeds obs), came back positive for ASD

Then came the discussion about where PDA sits on the Autism Spectrum. It was quite refreshing to be treated as an equal as it was recognised that I had done a great deal of research on PDA and that I was very up to date on my knowledge on the subject.

We discussed the purpose of diagnosis, the Paed said that for her it is more about the child’s strengths and weaknesses and what support to put into place. I said that was all well and good, but when you are faced with the choice of EBD school or ASD school, that it makes a LOT of difference and wording of the diagnosis, and where PDA sits is essential. The Paed agreed, but I got the impression she was trying to say PDA was not ASD.

She drew a box, put classic autism, PDD-NOS and Aspergers in and labelled the box PDD. I said that as far as I was aware the PDD box name was interchangeable with ASD so all those conditions within the box were coming under ASD. So PDA would sit on the autism spectrum. She was upfront and honest and said that she has to go off the ICD 10/ DSMIV criteria for autism, but understood that typical autism strategies do not work for PDA. I said some do, some don’t.

I asked if they were definitely diagnosing ASD. She said they were.

I was interested in how this would be worded and said that she cant have both PDA and ASD, and that I heard the ENC had previously diagnosed PDA as ‘ASD most closely described by PDA’- or similar.

I asked for a letter confirming the diagnosis, and they said they would both have their reports finished by the end of the week ready to go to the statement team as they agree that EBD school would not be suitable.

I pointed out that the ADHD scales were in the folder I gave them. The paed looked at them and agreed she meets the criteria, however the attention deficit part was hard for her to decipher regarding what aspects would be ADHD and what would be PDA anxiety related. She said she was happy to diagnose ASD- PDA but would have to consult CAMHS about ADHD as she wasn’t confident in doing so.

However she did say that I should consider medicating Dinky for the hyperactivity as her impulsivity could be dangerous and she cant stay on wrist reins forever. 

I asked for a letter confirming the diagnosis… and this is what I was given…

Image

The letter says discharge summary, that is because the social communication clinic is actually the diagnostic service, and Dinky now has a diagnosis and will go back under the community Paediatrician.

The Paediatrician said that she will stay on Dinky’s case as the paediatrician and will see us in 3-4 months regarding the ADHD diagnosis and medication. She gave me a booklet on adhd and circled the medication she was thinking she may prescribe for the hyperactivity/impulsivity.

 

Then that was that… someone should get into contact with regarding the ASD diagnosis and explain where we go from here.

 

So that is that…. Dinky now has a PDA diagnosis!

 

I have photocopied the letter for tomorrow morning.. I am taking it to the Muppet, muppet jr and work shy senco… seems they owe someone an apology… I would take one too!

 

The social workers manager

I don’t post in nearly a week and then do three posts in 2 days!

Unhappy with the social worker this morning, I felt it best to get in early and explain that I wasn’t happy.

Well I was NOT expecting the call that I got back from the social workers manager.

I was so upset and angry, that I didn’t take mental note of how the conversation went, so it might not make sense as bits are out of sequence.

Me: I was unhappy with the SW this morning, despite me telling her numerous times that she shouldn’t talk to dinky when dinky was upset as it will make it worse, she completely ignored me, and that led to me getting bitten, my hair pulled and to be kicked and punched as Dinky went into meltdown.

SWM: well, I am disappointed, there will be No changing social worker, if you have a problem we can iron it out and we will take things on board.

Me: well, that would be great if I had someone to have Dinky

SWM: well, I am surprised as the social worker is brilliant and very experienced

Me: so how many children has she worked with who have PDA?

SWM: she is very good at her job.

Me: so how come I had to do the running for the direct payments?

SWM: we have big case loads and we do ask you to find someone … Blah blah on a tangent ….

Me: that’s not what I am talking about, the people you will refer me to to help me have said that the social work team is supposed to work out costing, let me know how much it is, and I work with the direct payment people to draw up a contract and sort out insurance ect.
Like I don’t have enough to do, I have her statement which is delayed, her diagnostic appointment on Monday, I could do without having to work out how much I need to cover getting someone to have Dinky.

SWM: sometimes we have to ask parents to take on these responsibilities. Because you don’t have a partner unfortunately you have to do it on your own. But we are doing it

Me: yes finally.

SWM: well if you want to come down here we can discuss it.

Me: yes, but I haven’t got anyone to have Dinky, that is the problem! I’m so stressed out with it all, it is still going to take a few weeks! I feel lie, sending her back to that awful school just to get a break and get things done.

this is where it gets interesting… For you, for me I just wanted to reach down the phone and slap her! And I’m not violent!

SWM: you should send her back to the school, they would be delighted to have her back.

Me: no they wouldn’t, they may say that to you, but they excluded her 9 times in 10 weeks they have no idea what they are doing

SWM: yes they do they are the professionals

Me: pfft no they are not! 9 exclusions in 10 weeks and ended on a part time timetable- they can’t meet her needs, they also said they could fix my child!

SWM: you need to trust people, you need to work to getting little dinky back in school. You took her out, you need to take responsibility for that and live with that decision, that is why she is home all the time

Me: they can’t meet her needs!

SWM: you are making yourself ill and you have to take responsibility for that too. If you make yourself so Unwell who is going to look after Dinky?

Me: which is why we need support

SWM: and we have identified that and are in the process of sorting it. I am very disappointed, SW wants to work with you and I want to work with you but you need to decide whether or not you take that on, or we stop working with you completely.

Me: you have no idea how stressful it is

SWM: you need to learn to trust people to have dinky it is not healthy not to let her go.

Me: I have no problem letting dinky go with other people, she is going with her special needs group. And I would be happy to leave her for 9 hours with the person I have asked to take on the work of PA. It isn’t a case of not wanting to leave her, it is a case of the people having her being able to do it.

SWM: well, you still need to trust people. I have a meeting to get to. You decide whether you want our help, or whether you don’t.

I hung up the phone!

Well…..
I cried my eyes out, and then was absolutely furious!

First of all, I am sick of professionals taking the schools word as gospel, she wouldn’t even be at school full time, she won’t be in a classroom and she would have an untrained 1:1 in a room you can barely fit a desk in!
Her teacher would throw a fit if she had Dinky back in the classroom.

The other point is that it has been noted WHY I don’t trust social services. I guess it is easier to blame me and get me so angry I tell them to shove it where the sun doesn’t shine than it is for them to do their jobs!

Why do I always find the muppets?

That social worker won’t step foot in my house again!

I was worried this would happen… I was hoping we would get another half decent social worker. Apparently NOT!

She turns up and Dinky is already anxious because I had to put the dog in the kitchen so she didn’t jump all over the social worker.

Dinky hates me talking about her in front of her, so within 5 minutes Dinky was getting annoyed. I had already explained this would happen. Instead of leaving me to deal with Dinky the social worker asks her to sit down. I can see meltdown coming. She keeps calling dinky saying that she shouldn’t be doing this or that. I got to the point where I said “please don’t talk to her, it only makes it worse”, more talking, Dinky is hiding behind my chair, the social worker starts talking to her again. So I say “please don’t talk to her, it only makes it worse”, this time me saying that makes dinky worse! They then go up to see Dinky’s room, dinky is forcing me out of her room and trying to get the social worker to play with her.
The social worker then comes back down. Dinky tries to let the dog out and the social worker talks to her again! So I again explain that she is only making it worse. Dinky then gets really annoyed and starts hitting me. Social worker says “well that is not nice”… I could feel the rage building…

I said this is why I don’t like people coming out to the house, as dinky wS behind me trying to put both hands over my mouth to stop me talking.
The social worker says she will go back to her office, so dinky says she is not going yet (Dinky wanted the social worker to play with her). I have to peel dinky off the door, the social worker talks to her again, I get bitten three times and punched a few times before the social worker let herself out.

From there we had a 20 minute scream fest with physical attacks.

Once calm dinky says she was mad because we were talking about her and that the lady didn’t stay and play with her.

She didn’t even have anything new to tell me. They haven’t moved the direct payments forward, nor sorted the child in need (due to disability) plan. She had nothing. She said it would still take a few weeks from here to sort out the direct payments.

I have had enough of muppets!

Dinky is calmer now, but I can’t risk going anywhere with her apart from walking the dog. Even then I can see it being a challenge.

Feeling quite despondent today