So the last couple of weeks I have been extremely frustrated in regards to our LEA. It seems we are the example of how NOT to conduct a statement from request to final. Where 26 weeks turned into 48!

Tuesday I phoned the SEN manager at 9am, he promised either he or the case worker (who apparently is incapable of conveying any message other than ‘I have to consult with the manager’) would ‘try’ to contact me by 5pm Wednesday.
Wednesday evening came, no phone call…. I was so frustrated I emailed the SEN team manager, I copied in the MP, the social worker, the strategic commissioning manager for SEND, and the start of life minister.

Yesterday evening (Thursday) I got a reply.

I was sorry to receive your e-mail below in which you express the level of frustration that you are feeling.

My understanding is that, following our previous communications, we have now reached agreement with regard to the content of Dinky’s statement – with the exception of a school which has yet to be named in Part 4. With regard to this last point, we have referred to a range of independent/non-maintained special schools, in line with your preference. We have done this twice, with your agreement, to ensure all settings have seen Dinky’s revised statement as well as the original proposed statement, and thus to maximise the opportunity to obtain responses from appropriate schools. As it is, the second round of referrals did not lead to any further responses from other settings.

In our previous communications you indicated that, having visited, you would like dinky to have a day placement at x School.
I am pleased to confirm that x school has formally offered a place for Dinky, with effect from 4th September, and the Local Authority is in agreement with this placement.

Unless you respond to this e-mail stating that you no longer want a place at x school for dinky, we will issue a Final Statement naming that school.
We will also accept the offer of the place with x school and ask that they contact you directly to make arrangements for Dinky to start there at the earliest, mutually convenient opportunity. I understand that this might need to build up to full time over the first couple of weeks.
We will also advise our Transport Team about this placement and someone from that team will contact you in due course to make arrangements for Dinky’s daily travel to the school.

Please do not hesitate to contact me and/or the case worker, if you have any queries, or wish to discuss any of this.

Yours sincerely,

Muppet manager

I should be so excited and happy that we finally have a school placement for the awesome Dinky, however…

It feels like going to a restaurant and knowing you want ice cream as a desert, you have finished and you ask what types of ice cream they have.
In your head you are thinking about someone who has raved about Ben and Jerry’s chocolate fudge, sounds delicious. You then start to think about the other types you could have raspberry ripple, or lemon sorbet.
So when you are told the only one you can have is vanilla, it is slightly disappointing. There is nothing really wrong with Vanilla ice cream, it is quite nice but plain and really devoid of flavour.
It means instead of getting the bits you want in the ice cream as standard, you have to feel like an inconvenience by asking for some chocolate sauce, or toppings.

It is the same with the school. There, it is very simplistic, there are big plans but nothing there.

So this morning I got onto the school, they were surprised I had not been told about the placement sooner as the LEA had officially accepted and agreed a placement last week for Dinky, and the Higher level TA was notified on Tuesday.

I was so annoyed at the SEN team!

I discussed my safety concerns, and after seeing Dinky’s report they have put up 7 foot sports netting around the 3-4ft wall that Dinky could have got over, and before she starts they are going to make sure that she can’t leave the premises without an adult.

I discussed starting with the school and Dinky is going to two induction days on Thursday 4th September, and Friday 5th September. Then she will go Monday, Wednesday and Friday until both myself and the school feel she is ready to go in full time.

I am going in to meet Dinky’s teacher and 1:1 TA on Tuesday afternoon while she is out at play care, and discuss her provision.

I got on to the social worker, who was actually brilliant. I won’t say that too loud as she started off as the biggest muppet going and now she seems to be trying.
She completely agreed that the SEN manager was out of line not giving me a 2 minute email Tuesday afternoon to say that Dinky has been offered a place at x school. She was pleased they have put up the fencing and she is going to drive me down to the school for the meeting on Tuesday. At least then I don’t have to call her to tell her how it went.

If she carries on being half decent then I can see this actually working with the social worker. Which I NEVER thought I would say!

So yes after 48 weeks… We finally have a statement and a school for Dinky!

Wish professionals would put themselves in our shoes

I wondered if the professionals that pass judgement and provide the services or education for our SEN children would behave differently if they put themselves in our shoes?

If they felt the sheer force of indescribable mixed emotions at nearing September without a school placement for a six year old girl … Would they keep me more informed and try to advocate better for my Dinky?

If they felt the sheer determination to get the right help… Would they try harder?

If they spent more time talking to me as a parent rather than reading about case CHILD-A08… Would they understand better?

I want to give them a window into our life so they can see the impact of their delays, indecision and pure unprofessionalism.
I want them to see Dinky, see PDA and see that we are doing the best we can in extremely trying circumstances.

I want them to see that every time they brush me off, or get offended at my way of expressing my dissatisfaction and compromise their own integrity- it just exacerbates the truly difficult time this is.

I want then to see that when I am angry with them, it’s not personal, it is completely due to my complete and utter frustration that Dinky is not getting what she needs.

I look back and I think wow. I think wow because this time last year the consensus was that Dinky was just naughty and possibly had PDA but the doc didn’t know what that was, but she wasn’t autistic and had probable ADHD. Now I fought for her to see someone who understood PDA and now she has 5 diagnoses PDA included in that, she has no school and I have fought and got her a statement (without a named school). We have a social worker who is now trying to understand more, she is still a muppet but at least she is trying.

Dinky, well, it has been a tough time, these last few weeks I have really noticed how hyperactive she is, how much she lacks attention and concentration- I’ve always been aware of how impulsive she can be. It is really difficult, especially going out and about with a lad who has ASD, ADHD and other issues. The pair of them in any situation where they are not ‘doing’ something is awful as they wind each other up and Dinky quickly becomes aggressive as she can’t cope with the way he can be full on- not that she isn’t the same! Because she is! He just doesn’t react as often as she does, but he can be just as aggressive. The main thing is we both understand why each others child is the way they are and we don’t take offence to it, but it does make outings 100 times harder as Dinky is no longer in complete control. She can’t dictate which rides we go on and in which order, she can’t always sit where she wants or have what she wants as we have to accommodate the other child. Seeing him medicated for ADHD and seeing dinky next to him, I’m more and more certain that she does have ADHD and I have agreed to trial medication, however getting hold of the doctor who suggested I consider medication is another story.

I just want to get to a point where we can get on with life in a more positive manor because right now (and for the last year) all I have done is chase my tail and chase people whose job it is to be on top of things. But it is harder for them to do this when they just see ‘CHILD-A08’ under a pile of files with different names and different children and parents all wanting them to see that their children are not ‘CHILD-B99’ or ‘CHILD-C03’.

These are our lives and the lives of our children in the hands of 9-5 ers.

Tired of all these Autism and ADHD brats!


Pensive Aspie

10268546_1487432814806734_4018031423596980513_nWhen I was a kid they didn’t call it “Behavioral Disorders.”  They called it “Being a little brat!”  This is just ONE of many memes I have seen on my social networks. They are shared by my friends and family. I would like to think that is just the ignorant/uneducated who feel this way, but it isn’t.

Driving home from work a couple weeks ago, a college-educated peer told me that she felt that “most of these autism and adhd diagnoses” are fabricated.  Her son had some of the traits of a child with Autism/ADHD but HE doesn’t have Autism/ADHD so maybe it doesn’t really exist. She felt it was just an “excuse” for people NOT to parent. Did I mention she was COLLEGE EDUCATED?!?  She knew about my blog, my Asperger’s, and my beliefs, but since my thoughts are different from hers, of course mine MUST be wrong.  After…

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Dinky now has a statement, and possibly a school!

This week has seen 2 big education wins.

Firstly, yesterday I went to see I a special school, it was classed as an EBD school but it was the only school that replied to our DPS.

I actually went to show the social worker why EBD wouldn’t work for Dinky.

When I got there I must say I was mightily impressed! The school gives each child a keyworker and the curriculum is tailored to each individual child. Dinky would be the youngest and would probably share a classroom with 2 other children who would be slightly older.
They strive to take children with a range of additional needs not just BESD and have a number of autistic students.

Dinky would be able to leave the classroom when necessary with her key worker and PDA strategies would be utilised.

They offered for Dinky to write her own menu to take into account her rigid and repetitive diet, they offered to purchase her, her own iPad for school use using the pupil premium, and to make any type of visual they need.

They told me their communications book is vital, and they expect parents to write in it every evening in order to let them know what the child’s evening was like.

It was basically everything I wanted to happen at her old school, but with less children, Dinky will be in a school with just 13 children from 6 all the way up to 16 years.

Then today, her final statement appeared. Not one mention of BESD, only one mention of challenging behaviour and that it was ‘inextricably linked to her autism/ communication and interaction difficulties’.
It feels amazing, especially when my original letter requesting the statement was 25th September 2013, it has taken nearly 11 months to get here.

Part 4- there is no school named but it says

“A day placement at a special school which caters for children and young people with social communication and interaction difficulties, PDA, sensory difficulties and associated challenging behaviour”

I could do a happy dance that finally Dinky has a statement and education is coming together, in June it was health coming together, and by the sounds of it, social care may also be coming together in September! (The SW said that she will try and get direct payment which gives more during the holidays but some hours during the week so that we can Keep Dinky’s current 1:1 who dinky adores and who adores Dinky. Actually I’m surprised as apparently Dinky has had a number of meltdowns and yet they have been dealt with and still the 1:1 comes back and asks what hours we had agreed and what Dinky wants to do!

I feel some things are really coming together.

It is such a shame that something else entirely can take the shine off these events.

The county autism centre seem set on lying about the fact that they choose when to follow their own rules. I have the proof that they lied, I have the proof that they said PDA wasn’t an ASD, where does this get me? Yes, blocked in a childish attempt by the project manager to show me that she won’t be trifled with.

Hmm. I think that she may feel differently when I can prove IN WRITING that they have acted in a discriminatory fashion and then lied to cover their backs, if anything more comes of it, it would be considered victimisation and I WILL NOT STAND FOR IT!

Dinky deserves the support and understanding of the county autism centre, yet she was deemed unfit for services. I went over their heads and they have now got someone in to train staff on PDA, who is telling their staff that no one in the uk has a diagnosis of PDA, and that PDA is different from ASD.


Maybe that person should do some research.

The PDA society
The PDA resource page

Any of these websites would instantly rectify the gaps in the trainers knowledge.

I am not happy, and I won’t stand for it!

I should be nearing the end of Dinky’s battles to get anywhere, instead I have to fight against prejudice from the county Autism centre. They will say ‘oh but we now provide training on PDA’, yes- but the training is actually misinformed, I am still blocked, still receive no services for dinky and they still lied.