Trying to work a way forward, and I think I preferred not socialising.

It is difficult to find a way out of this mess with education. I am so angry because had they finished her statement on time, then Dinky may have got a school place in a school that understands PDA for this September, but finding a school place for a 6 year old girl is really difficult, as some schools, especially independent/ non maintained special schools, seem to start from 7, because we all know, hit 7 hand that is when autism kicks in…. (Rolls eyes massively).

I’m starting to think the only way forward is to have her home for a year while I wait for her to be old enough to attend a special school that might understand her.
However both social services and education would have to get their fingers out and support us properly. Especially as I don’t know WHAT to try to do with her. We have been doing lots on animals and dinos but we can’t do that from home. I have to take her to experience it first hand. We have to go to museums, zoos, sealife ect, we can’t do it from books, it is not interesting and doesn’t grab her attention- she becomes really avoidant as the learning aspect and therefore the demand, is so much more obvious when doing book work or fact finding.

We can’t do animals and dinos forever.

Also I need help to meet the identified needs. She needs a sensory diet for me to follow, she needs help with her fine motor skills, she needs social skills lessons, and she needs help learning how to express her emotions in a safe way. I can’t do that. I am not trained, I am not am expert. I know dinky, doesn’t mean I know OT, SaL, and I am no teacher.

In regards to socialising, I have found far too many people to be fake, I also don’t see why anyone would lie to make out their child is autistic, nor do I get why people won’t say to peoples face what they say to others. Life would be far easier if people were honest.

It makes it hard to trust anyone.

I think I am better off by myself. No one can hurt me or lie to me if I don’t give them the chance to.

I just don’t get people!

School start crumbles and I begin my actions on the plan

I have only mentioned this on the Facebook page, but the school visit a few days ago didn’t go well, at all. So there will not be a ‘Dinky starts her new school’ post for a while… let me explain.

 

Tuesday was a very busy day… I had got dinky a day place at the local adventure playground play care as I had an appointment and Dinky’s 1:1 couldn’t do the whole day.

I started with getting Dinky ready, then walking the dog, and then meeting with dinky’s 1:1.

All was going well, until my appointment… which I shall come back to later.

The social worker picked me up and we drove down to the school that had accepted Dinky.

We got there a little early so we took a look at the biggest issue I had with the school originally which was the wall which was not very high and Dinky could climb over quite easily and run into the main costal road for the large town, or into the sea if she made it through the cars with out being hit.

The social worker walked round with me, there was fencing around the ONE side of the school, but not at the wall I was concerned about, instead of putting up a fence they had planted some bushes. I was quite disappointed when I found a perfect Dinky sized escape route which was given a mound of soil for a run up towards it. I instantly turned to the social worker and said that Dinky would be up that mound, through that gap – afterall we don’t call her Dinky for nothing!- and out into traffic. Meanwhile an adult would have to run to the gate (about 300 yards), unlock it, and run round (adding another 150 yards) before dinks had managed to cross the pavement… Completely unsafe! The social worker said that it may be that they were having additional safety measures added before Thursday. I was doubtful.

We were just about to go in when the head came out, she was covered in paint but invited us in. She introduced me to Dinky’s new teacher.

We chatted as we were shown the classroom- I am not going to recite the whole visit, but the main points of note.

-I was looking around as the room seemed to be quite the visual assault, Dinky’s statement clearly says she needs a very carefully thought out classroom as she can be easily distracted by visual stimuli. During my wondering whether or not this would actually pose an issue to Dinky I saw that they had mixed up the alphabet on the wall display, this irritated me so much I couldn’t pay attention to the conversation, so I had to say something. The teacher looked quite embarrassed.

- We were discussing something and instantly I knew that it would not be good for Dinky with her PDA. I asked her if she would still use that technique with Dinky, she looked stunned and asked why I had asked. I said because of her PDA, I asked if she knew what PDA was. She got all flustered. She said PDA is relatively new as a diagnosis and that she wasn’t really that sure. Couldn’t fault her honesty, but I was more than a little disappointed!

- I asked about the IEP and implantation of the sensory diet. She asked me what a sensory diet was.

**** As you can imagine, I was getting more frustrated by the SECOND****

- We discussed Dinky’s current ability, she was unaware that Dinky was 1, possibly 2 stages further in reading since the school had managed to get her to read stage 4 on the oxford reading tree back in October 2013!

- I asked about the wall leading onto the coastal road. There was a TA in the class fixing a computer and he got up and said “Does she know the area?” I replied no. He said “Oh, that’s good, because we don’t ever take the young people the same way twice in a row as then they would know which way to run”. By this point I was almost speechless, I couldn’t believe that this school was so open about their disregard for pupil safety!

- Eventually we got the head to come back in and discuss the lunch arrangements, and I asked her about the wall and the safety, she said “it will be better once the bushes grow”. By this point I thought nothing else could be worse…But we shall come to that later!

-The head was talking about the plan for Dinky to go in just 3 days a week to begin with, and she began talking about the to other boys who would be in Dinky’s class. We went to set up a date for the next meeting and the head said it was decided last week that she would be in the classroom in the afternoons due to the needs of the lad who is starting doing afternoons only. I didn’t think of this bit until I got home.. they had worked out the needs of this one particular child, but not even bothered to research PDA for Dinky!

- Then… oh boy… then I was asked if I wanted to see the sensory room. The last time I was there she was discussing the fact that they had put a corner of a room aside for a sensory area. I was optimistic (how I was after the meeting we had just been having is beyond me!), Oh how I should not have been! The sensory area was basically a small 2-3ft in diameter round table with a cheap novelty bubble tube and two lava lamps on, and underneath were about 5 or 6 £1 fiddle toys, a few different textured fabrics, and a small square of bubble wrap. I said that the bubble tube was more than likely to be broken within a week, because I had made the same mistake with buying one for Dinky, they are not SEN standard at all. I also said that I wasn’t keen on the bubble lamps as they get hot.

I am astounded that this school can offer any type of placement for an autistic child! They assured me they could meet the needs on Dinky’s statement and that they were going to sort my safety concerns. They hadn’t. At home I had a think, and it didn’t take long for me to decide that I was just going to have to look for an alternative as this school was just never going to take her safety seriously.

If there is ever a time that I needed to hear some evidence that I made the right decision it was that very night. Dinky came down the stairs after bedtime and told me that she had wanted to come home and had climbed the fence at Play care. This was a demand free, play centre- the more mess the better the fun- attitude… she would have been hit by a car within the week! I felt awful that she had tried to escape, but vindicated that I had made the right choice for Dinky.

 

Onto the ‘me’ aspect of Dinky and me. I have only got a few actions on dinky’s plan and to be honest only one that I had to start doing as the rest is all ‘interact with professionals’ and ‘go to medical appointments for Dinky’. So the only one on there I had to do was ‘to have time to work on mental health’. Which in itself is quite insulting to have on there as it really is none of their bloody business, especially considering that I do not do any of the 3 things which would actually see me get support for my ‘mental health issues’, the only reason it is an issue, is because it was easier for the old school to make out I was a basket case than to admit they got it wrong and completely failed Dinky for so long.
Anyway, in the spirit of working WITH the social worker I went along to my appointment which was an assessment for more counselling. To be honest, it is pretty rubbish, 20 sessions and you should be cured, working on a recovery model for long term mental health issues is not exactly the way forward.
So I went in and we had the usual ‘I have read your notes from the doctor and your previous counsellor’, followed by the condescending ‘you have been through so much for someone so young’.

So she asks why I am there… I had to fight very hard not to treat it like a big joke and say ‘I thought you read my notes’. Instead I told her the truth- the social worker set it as an action, I am doing it.
She asked why I have a social worker, She is Dinky’s. That just confused the woman more! SO I explained about Dinky’s PDA and what the old school did regarding social services ect.. so many times she let out audible gasps and tuts, we kept going further back to the first school and a brief about PDA and autism. There was more talk and the further we delved into the chaos that is Dinky and the battle, she caught me off guard..

“And how do you feel about the diagnosis?” and “How do you feel about putting her in a special school?”, do you know, not a SINGLE professional has asked me those questions. They have all seen me fight to get her assessed and to find a suitable placement, but none asked me how this impacted on me as a person.
I told her that we didn’t have time to delve into that, she looked at her piece of paper asked me some more questions and ran through the list of the crappy aspects of my life and then put her paper down, sat back and said “how you haven’t had a breakdown is beyond me”.
We talked about what I wanted from the service, I told her they cant provide me with what I need but I need to seem willing, but she said that she will set me up with someone, if only just to sound off about the current situation considering that I am not exactly rolling in actual support.

so it has been interesting… the last few days I have been school searching and come to the conclusion that the neighbouring county which doesn’t diagnose PDA has better schools with PDA experience!
If you don’t hear from me.. I shall be continuing my juggling act of looking after an ASD-PDA and possibly ADHD child while making calls, researching schools and sending off emails, waiting for respite days to start my driving lessons and visit schools and meet with the LEA!

 (Like I said to the woman from the counselling service… its not like I have TIME for a breakdown ;-) haha)

BIG SCHOOL NEWS!

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.