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…

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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!

How special school is going for Dinky… (Plus workmen)

So today marks the end of 3 weeks at Dinky’s new special school.

So far I’m really impressed.

Today Dinky got out of her taxi and ran to me, really excited to show me her star of the week award!
When I read it I almost cried!

She got Star of the week for ‘taking part in all the numeracy lessons this week’

To most people this is not a big deal. However when your child has been vilified in two mainstream schools for failing to comply and take part in the teachers lesson, being made out to be naughty and wilful, and worse… To be scrutinised under the Boxall profile because they believe the following…

“It is widely agreed that children with social, emotional and behavioural difficulties (SEBD) are the biggest challenge to the effective running of schools. These are children who do not respond to teachers’ best efforts, they fail to learn, they can leave teachers frustrated, quite often resentful and with their professional confidence undermined. They also spoil the atmosphere for the rest of the class, consuming the teacher’s time and energy, diverting it away from children who could use it so much better.”

To then go to a school who acknowledge her autism, take on board PDA, who actually realise that the more they try to get her to comply the less likely she is to do so… Gets results which are the norm in terms of a typically developing child- but is abso-frigging-loutely BRILLIANT for Dinky!

She managed to do 5 numeracy lessons in 5 days! Which meant that the staff found ways of making it fun, interesting and without massive demands, and Dinky responded with actually taking part and learning. In her 3rd year of education… Dinky is finally learning!

I could jump up and down and run round I’m so happy!

HOWEVER… It does come at a price. Dinky has reduced the already limited diet to next to nothing, she will only eat nuggets and veg at home for dinner, and she is only eating the veg at school.
School are worried and so am I. It’s great that she loves vegetables, and most people have the opposite problem, but I’m struggling to give her the other foods she needs.

This is only made worse by the fact that our boiler broke down at the beginning of the week and they keep finding more problems.
Meltdowns have been rife this week with the changes and coming home to workmen. Tuesday we had a new boiler and new radiators, Wednesday we had scaffolding put up, yesterday we had a replacement radiator and today we have had a system flush.

So Monday meltdown was because it was cold and she didn’t like the smell ( I think of the hot air from the fan heater).
Tuesday’s meltdown was because she had a new radiator in her bedroom and they moved the table in her room- plus no radiator in the living room.
Wednesday’s meltdown was because there was a man still in the house trying to sort out a blockage and we had scaffolding outside.
Thursday (yesterday)- was because they put up the radiator in the living room.
Today after the certificate, we had a much smaller meltdown in which she spent a while shouting and stomping and crying because there was yet another man in the house, and he spoke to her.

In other news….

I applied for the higher Mobility element for Dinky on the DLA due to her refusals to walk.
It was turned down, because the Muppet took one out of context line in the statement even more out of context.
Because Dinky seeks out movement experiences apparently she therefore consciously chooses not to walk!

I of course will appeal, but, honestly, the guy is a muppet!

So I won’t be driving anytime soon unless I find a really cheap car and hope it makes it through an MOT.
I’m not at ALL annoyed that my grandad is giving my brother his car for passing his test to use to get to work, while I have to miss out on being a part of Dinky’s school life until I can afford to by a car which isn’t a death trap, and having to take my ASD-PDA ect child on public transport which she hates.
Not AT ALL… Ok, maybe, a little. I really should be used it by now, but it is still hard to take.

Both my dad and I were turned down for loans.

Oooh but the new social worker seems really nice, and clued up, she is going to help me with the appeal.

Right now Dinky is playing disney infinity with my dad…

I need to go cook dinner…

MY GIRL GOT STAR OF THE WEEK! :-)

New social worker, a meeting, CAMHS and the rest

This morning dinky woke up, after a very small amount of sleep, and despite being off to breakfast club at school, she had a little breakfast at home to keep to her routine and to tide her over until she got to school.

I then took the dog out and tidied up and hoovered before the social workers descended.
The old social worker was bringing the new social worker.

Now, i must admit, after a rather bad start, this social worker has moved things along and really fought for us, as did her predecessor. Most would think I would then have a high bar for the next person… Actually, I was just hoping my luck hadn’t run out!

So on the dot the two social workers came into the house.

I was handed the care plan, carers assessment and the personal budget paperwork. We didn’t run through it, we had a little chat and from the sounds of it Dinky’s new social worker is exactly the type of social worker with the right knowledge that we need. She is more than aware of the charities that we could apply to, she has already said if Dinky’s DLA doesn’t come back with the right rates she will help me fight it. She had already looked over Dinky’s case file and asked some questions… More importantly she took the time to understand PDA, which is great.
The personal budget should be in effect soon, so I can get dinky some sensory equipment and pay for the payroll service ect and the 1:1 when I can find a new one.

We discussed a meeting to be had with all relevant professionals, although they are aware that most medical professionals don’t attend these meetings.
It was my choice to phone the school and camhs later to find out if the ADHD assessment had been booked and whether we could have the meeting that day so that the CAMHS doc could come.

Other than that we discussed how dinky was getting on at school, the social worker did what everyone does when they come to my house and commented on all the pictures we have of our days out. We have 30, and that is without one on every day out, but those are from her time out of education.

I didn’t have much time to go over the paperwork they left me because I went to a parent meeting straight after. It was interesting to see that after we have pretty much passed the point of needing the services in area, they have decided to get their act together!
Speech and language have been restructured, again. However as Dinky is now in an independent school and has OT and SALT in place, we no longer qualify for these services. However it is annoying for them to talk about early intervention… Dinky is almost 7!

Then they discussed EHCPs, our area SEN team is so back logged with transfers and new ehcps that they have had to put a stop on non urgent phone calls and emails and are pumping out 21 transferred ehcps a day!

This didn’t make me feel sorry for them, nor make me regret sending a massive email to the head of customer relations as the step before taking the county council to the local ombudsmen, over the seriously late statement and ineffective and time consuming process of identifying and agreeing a school placement.

The most irritating part was having to listen to someone contradict themselves countless times regarding their child’s difficulties, the same person who said her son definitely had PDA and then when she was told he didn’t, the symptoms disappeared overnight. The same person that seems to think that we are all stupid and don’t know how the system works.

But I got out of there, phoned the school, and surprise surprise, CAMHS didn’t reschedule the appointment at the new school.

So I phoned CAMHS and they said that they have received some very good and detailed information from the school and we should go from there, but the person on the phone was unable to tell me when this was likely to be. I explained about the meeting that needs to happen at the new school and that it would be beneficial to have the doc attend, so she took my number and is going to get him to phone me at some point in order to go over the new plan of action and find out whether or not he would be available to attend a meeting regarding Dinky.

The social worker emailed and gave me some dates that she would like to meet Dinky, just so she has met her.

Dinky came home from school…

She refused point blank to walk the dog… We had been doing so well… But in her special buggy She went.

She was talking but it made very little sense.

Then she had dinner, played disney infinity and went up to sit in her sensory net swing before bed.

When it comes to the ADHD assessment, I don’t think I am bothered which way it goes. At the moment we are managing, the reason for the assessment is to discuss medication for her current hyperactivity, impulsivity, attention and concentration difficulties, to see whether that helps her learning.
I however, know that even if I did agree to medicate, as the idea is that it will help her… I don’t think it will have as much impact on her learning ability as they think. ADHD meds won’t stop her ASD-PDA, so she will still avoid work and that is what the biggest barrier to her learning is. So even if they decide she doesn’t fully meet the criteria, it won’t make that much of a difference.