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…


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.

Accountability- the lack of it in our services meant to support children with SEN

This post will probably turn into a rant, but somewhere along the line the whole concept of accountability has been lost.

Those who have followed our journey from when Dinky left her first school to go into the second school, who read from the beginning when I first found out about PDA, will know that most of the hold ups and stress has come from ‘professionals’ who have been rather inept at their own jobs.

The first school, I admit, I didn’t handle well, I didn’t fight, I let them have what they wanted- dinky in another school out of their hair. I didn’t question it, I just up sticks and walked away.

However from that point on, not ONE professional has had any accountability for how Dinky and I were treated, more importantly Dinky.
Now I know it could have been worse, in areas which don’t understand PDA, parenting gets blamed as a first step. Again no accountability by professionals.

The second school showed no accountability for their actions. I went to the board of governors and the MP and nothing. Our MP is under the impression that taking the side of the professionals against the person who initiated contact was the way forward. Saying if I felt that strongly I should take it higher, which I did but never received a response and I couldn’t keep on top of it because I was dealing with numerous professionals and Dinky all on my own with no real life back up.
So the school have not been held accountable for their complete lack of professionalism, their awful treatment of an autistic child, and their witch hunt against me, the parent, as the cause of the difficulties.

Integrated services have not been made accountable for their actions. The MP again sided with the manager who managed to worm her way out by saying I took her statement the wrong way. Apparently when she said “why should the school put in support without a diagnosis” she meant… “They shouldn’t need a diagnosis”. Again at this point things were going downhill and the MP said he didn’t have any authority to say anything. So he didn’t. This manager again, escapes all accountability for allowing the school to continue to use the wrong strategies against medical advice.

The SEN education team, the biggest area where there is a complete lack of accountability and everyone and everything is blamed for poor ‘customer relations’, poor time keeping, lack of ability to keep to a deadline, lack of attention to detail when statement writing, lack of communicative skills, lack of ability to think ahead… Makes for a pretty bad CV, yet these people remain in their jobs with their local government pay scales and complete lack of accountability. I’m sure this is what the tax payer has in mind when they think about where their taxes go, but that’s a different story all together.

The MP himself… No accountability. He sits in parliament and says how wonderful the autism group is that has shown an incredible lack of decency and favouritism toward a family where no child has been diagnosed with autism over my child who has.
Also the group that removed me as admin because I dare to question how a child’s PDA symptoms disappear overnight.
Yet given the chance to help an autistic child, and his response is “sorry there isn’t much I can do but ask them to review the case”. Why do we go to our MPs when our local government let us down if they are not going to stand up for us, when they are not willing to help take things further, to get justice for their constituents. I didn’t even want justice, all I wanted was for my child to be treated fairly, and like her peers.

Dinky was out of school for 11 months.. Over a year if you count the fact that she barely spent any time in school over the last 10 weeks she was at the second mainstream. Yet if any other parent was to pull their kid out of school for a week to go on holiday than the parents would be held accountable and have to face a fine for taking their children out of education.
Again local government escapes accountability.

I could have complained, and I did, but I have been so busy and invested in my own child, that I haven’t been able to do this alone.

So our county council and MP get to crack open the bubbly because they have escaped accountability yet again.

Well, I have sent the MP an email, thanking him for his ‘support’, and assured him that his rival will be extremely pleased that he has managed to convince one of his own constituents to vote for them, instead of him, at the next election.
Small accountability. Unfortunately we don’t have a say in who gets to mess up our kids education from within the county council.

Dinky’s start to school

‘Today is Dinky’s 3rd day at her new school.

So far so good.

She seems ok when she comes home. Avoidant and stimming but no where near as bad as she was at mainstream.

I know on the first day she was told that she wasn’t the teacher, and that she made her 1:1 read to the reading dog as she didn’t want to do it.. So it is nice to see they totally see the PDA and Dinky isn’t one of these children that people say ‘What is the parent talking about?’

I have no idea what happened yesterday as Dinky didn’t come home with the communication folder, and she isn’t very forthcoming.

Personally, right now, she isn’t due home for half an hour and I miss her. However I have managed to get SOO much sorted while she is at school. I have a little more energy as I’m not constantly walking in egg shells, and I would feel more guilty about feeling this way if it wasn’t for the fact that Dinky actually says she is happy when I say that the next day is a school day.

The battle to get here doesn’t feel like a battle. At least not the bits that people normally have to battle. They tried to block the statutory assessment and then rolled over at the first hurdle. They got the initial statement wrong. once I had FINALLY got hold of the manager and he actually had time to discuss it, he agreed to my changes. When they tried to put her in the wrong school, they agreed to my point. When I found the school, they were ok about it. Really the battle was the time, pushing decisions to be made, for Dinky’s case to be looked at, to find out where we were. and now it feels like it is done.

Diagnosis was the same thing, apart from Dinky paving a new diagnostic pathway for PDA in our area, it was just time consuming

The biggest battle was social care. However after all the fighting we now have an agreed personal budget.

So now I am having to sort out all the paperwork that goes with employing a PA. Which is fine.

I’m very glad that Muppets are few and far between.

I JUST got a phone call from the school! Dinky is settling in well!

So yes, school is going well, and I am rambling so I shall leave it there. (plus dinky will be home any minute!)