I win one… Wait for everything else!

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I don’t think I am impatient, I just think I find it hard to wait for answers. I can wait for most things, but anything to do with Dinky and it drives me mad!

So I shall start with the win!

A few days ago I wrote everything is a fight when your child has PDA , in which I explained about the local autism services turning Dinky down and my response to it…

Well. Today I got this email

Dear Dinky’s mum

I have received an email from county council team who have confirmed that we can support Dinky with a diagnosis of PDA/ or report demonstrating that she has provisional diagnosis. I will also make sure our children’s team are aware of this so you don’t get conflicting information in the future.

We will aim to offer either 1:1 or group support as soon as we are able but as I explained in my previous email we have a large waiting list currently for the xxxx area.

I hope this answers the queries you have raised. If you however wish to discuss this further I will be at our office tomorrow on xxxx xxx xxxx and they will transfer you through.

Best wishes

WIN!!!

Although to be fair, I don’t think that they had much of a choice given that they already had a child with no diagnosis, and a child with PDA already accessing their support services.
To me it feels like a win. If I left it, dinky might not have ever received services and other children with PDA may have been turned away by the two people I spoke to! So yes. I am claiming that one!

Unfortunately, everything else remains the same.
I have to wait. I hate the not knowing, I hate having to second guess where the next battle lies and what it will be regarding. It made me think about the educational psychologist who said “why do you seem like you are gearing up for a fight? The LEA are not your enemy”
That is not what it feels like. I have had the integrated services manager say that ‘there are concerns over parenting’, and the LEA have already offered another child a place at the special school while dinky and I are left hanging. I sit here wondering whether I will have to appeal the statement and whether or not all the special school places would have gone by the time it gets to tribunal. I am ready to fight, but I don’t know how much of a fight I have to put up and to whom.
I am yet to get a definite appointment for Dinky’s assessment or her specialist SALT assessments, and need them to be done ASAP.
STILL, I ask for some respite during the week, but everyone’s answer, especially social care, is to just send her back to THAT school. Which I have already said to all that have mentioned it… OVER MY DEAD BODY!… And I mean it!!!

I am exhausted, Dinky has found the new dog and then my dad’s unpredictability over the long Easter weekend a bit unsettling, she is also waiting for the new SN clubhouse (in our town) opening party on Saturday. She is really looking forward to it, but she is also very anxious.
Dinky really has been hyper and repeating lots of phrases from TV.

I have had a couple of phone calls yesterday, at the time I was rather irritated by Dinky’s behaviour, there are very few rules in this house, one of those is to behave while I am on the phone. However the person on the other end kept laughing at what I was saying.. Which is hardly surprising looking back

“Should you really be sniffing and licking the dog?”
“Dogs don’t like tight hugs”
“We don’t need the lights on in the middle of the day”
“I can’t work out your sign language”
“Your cup is under the table next to the bat cave”

After I put the phone down dinky calmed down, actually after a really long walk and run around with Sky (our nearly 7 month old puppy), she actually fell asleep on the sofa… Albeit for just 20 minutes, but that would NEVER have happened when she was at school!

My sideline battle is getting people to understand PDA. I am getting rather sick of people (even in the autism community- even in my little local autism family), wondering why Dinky can’t stick it out in mainstream and because she ‘seems bright’ she shouldn’t be going to the local special school anyway.
They just do not understand the unique challenges that Dinky a tons of children and adults like her face. They see it as a ‘mild autism’, it just so happened that the brilliant Jane Sherwin author of understandingPDA.com has written some brilliant information cards found here .
Which I have shared.
I also made one with the charts on

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(Although I forgot to put on what the abbreviations stand for- PDA – pathological demand avoidance. ASD – Autism Spectrum Disorder. CP- conduct problems- such as ODD ect.)

I wanted to make the point that actually PDA scores as having more difficulties in some aspects of social communication than your typical ASDs.
More so I wanted to prove after the autism charity turned us down that people understood PDA IS an autism spectrum condition.

So now I await my next fight…..

I’m just wondering where it will come from….

When support isn’t supportive

Trying to get respite in this area is like trying to get blood from a stone.

All areas in England should have ‘short breaks’, it used to be called aiming higher, but it may also be called something else entirely.
Short breaks will be replaced by the ‘local offer’ under the children and families bill 2014 when it comes into effect in September, although the roll out may be (probably will be), a bit hit and miss to begin with.

For now, we have short breaks….

They are responsible for providing families with children with sen/disabilities a short break/respite.

We have quite a few providers in our county, Dinky’s SN group is one of them. They offer 2.5 hours a month, this takes the form of a small trip or play session with a 1:1 worker within the group for £5. In the school holidays this is 5 hours per week of the holidays for £12.50 and includes bigger trips out. Dinky went to the local farm (which is an attraction and not cheap) last week and loved it. Dinky always comes back a little more avoidant, but happy. And I feel like I have actually had a break.

I had dinky on the waiting list for many more, on the advice of one of the providers as they are completely over subscribed.

I was lucky enough to get a fortnightly 1:1 for 4 hours. This was much more expensive at £10 for the 4 hours plus the activity and mileage.
For example, she took dinky to the tree top adventure as she offered without consulting me and the cost involved.
It cost
£10 for the 1:1,
£18 for the admission (and that was only because I managed to get them to do the carer free),
£3 in mileage,
£3 parking, and
£5 because it was only an hour and they went to see the animals and dinky wanted a tiger toy.
So 4 hours respite cost a grand total of £39. Dinky came back rather flustered but ok.

It is not so much the cost but I do refuse to pay this amount for a service after the cinema trip 2 weeks ago.
There was an autism friendly screening of Rio 2 at all cineworld cinemas across England. Dinky really wanted to go see it. The reason the autism friendly screenings are so good, is that she can get up move around, talk and basically ignore the demands placed on her at the normal screenings. So I felt that this would be a good activity.
When 1pm came, and dinky came home- well, I was completely unprepared. The stress and the despondent look and actions of the 1:1 worker were only a fraction of the shock of Dinky being completely stressed out and non-verbal, grunting and making noises.
The 1:1 worker said that Dinky had been difficult and grumpy, with that Dinky pushed past me and went to her room with her iPad, and I asked what happened. The 1:1 worker had said they were early for the cinema so they went into a restaurant, and she had a coffee and breakfast. Dinky had said she didn’t like the smell of the place. Then, they went to the cinema, and dinky was swinging on the bar (as she does), and the worker told her that she can’t do that with her. The worker seemed very annoyed and I left it.

Dinky was not happy, I had to leave her for an hour before I could even talk to her and then it took me a further couple of hours to calm her down and for her to actually talk to me. She didn’t say anything about the cinema, but said she didn’t want to go with the 1:1 again.

For the past 2 weeks I have been wondering if it is worth it?
It could have just been a one off, but equally, it may be that she just doesn’t get Dinky. She has an autistic son, but the strategies are different, she has read my understanding PDA book by Phil Christie et al, and she has a very detailed support plan which describes the type of interaction that is appropriate for Dinky and how to help her.
She obviously didn’t use ANY of it when out.
Even the next day we were having post school-like mini meltdowns over small things.

Was it worth the break? Nope. Would I pay £25 for her to come back in that state again? .. No.
I refuse to pay for support hat isn’t supportive.
While I can understand the whispers of ‘she keeps turning down support and then moans that she gets no support’, what they fail to realise is that I am not just going to stick dinky with just anybody, to get a few hours rest without her, only to have to deal with the fall out. It is not right for DINKY. Respite isn’t just for me, it is for her too, she deserves people who make a real effort to understand her and treat her with the respect she deserves. Dinky has NEVER come back from the SN group in that state! She has had meltdowns, sure, and been really avoidant, but she had a good time.
So yes, I refuse to keep support that isn’t supportive!

Which brings me to my dad.

Bless him, he does now at least TRY to help, he just doesn’t get it. I have drip fed him with information, he is FINALLY accepting of PDA. However I still have to referee and if I do go do my shopping, or go to an evening autism support meeting, then I generally come back to Dinky in a huff and my dad in a mood and find that there has been a lot of shouting and arguing in my absence.
I have lost count of the amount of time I have had to say “ENOUGH” to the pair of them and say to my dad “what part of PATHOLOGICAL DEMAND AVOIDANCE do you NOT understand?”

So most of the time, it is just easier to look after dinky alone, as I actually understand her.

Support is only actually support if it is supportive!

Being the parent of a child with PDA is lonely at times and for the most part pretty full on, but it is the only way to do what is right for them.

It was never going to be easy…

My last post was a bit… Well. It was the excess produce of my own mini meltdown.
It was never going to be easy parenting a child with PDA and having PTSD. Lately sleep has not been easy for me, that coupled with the events that have unfolded in the last week, and it becomes inevitable that cracks begin to show.
From the rubbish proposed statement, to the social services assessment paperwork, to the contents of the last post and having to deal with the day in day out PDA and meltdowns that have come with the new puppy.. It hasn’t been an easy time.

Wednesday was a mixed bag day. In the morning we had gone to the local autism coffee morning. I didn’t go to the last one that happened during the holidays as I knew it would be a disaster… However, at this one the specialist health visitor was going to be there. I have been trying to get them involved to be another person who sees me with dinky who can vouch for my parenting to drown out the two shocking statements in the social services assessment.
Turns out I was right not to take her before!
She has a friend, another case of suspected PDA, but the two of them together can be a nightmare. They were playing together, kind of. On the surface it looked like they were engaged together in goodie and baddie chasing game. However a deeper look and actually dinky had her own version of events and the boy had another. However while they were mostly happy, it was good to listen to what the health visitor had to say.
Before I could get to that part my phone rang.
It was the specialist ASD speech and language therapist that does the second professional assessment for a diagnosis.
She wanted to talk about how we proceed, so I gave her an idea of the activities we will be doing and she has agreed to see dinky for an hour at home, and then two visits, either to her rebound therapy club that starts in May, or the new SN clubhouse which we will be practically living in until Dinky goes back to school!
Then I find out about the special school place that has been allocated to the lad that got his PDA diagnosis a month or so ago. As much as I was happy for him, and I am, because he needs that place too. It was like a punch to the gut after I was told that Dinky almost certainly had a place.
We were at the autism support place that said Dinky wasn’t allowed to go, and I was called to the office to talk to the local people, who I know do agree that PDA is an ASD. I explained that it is hard enough without an autism charity turning her down too, PDA is so hard to get people to understand. She said she still wanted to support us, and would come to any meetings ect. I said there was no point integrated services had made their mind up that I was a bad parent. She said that she knows I am not.

Now I’m not exactly the best at dealing with emotions. With the PTSD comes a sort of feeling of being emotionally crippled. I deflect or internalise emotions and am generally good at not letting them surface… Except where Dinky is concerned, she is like my kryptonite. I spent years perfecting my internal structure to hold it all in, the woman that took me in at 16 and her children were always trying to make me watch things that would make me cry as they said I was like a robot- a robot that only feels anger.
So I sat and was bored out of my skull watching Bambi, and other equally pointless supposedly sad films and nothing. Turns out only 2 films made me cry- the green mile, and pay it forward.
When I started working, any ‘chat’ with the boss and is be in tears… Quite embarrassing, but my boss was quite good about it seeing as I was, at the time, considered his best shoey.
Since Dinky came along, anything to do with how I feel about her and how I feel either myself or someone else has let her down and it’s like the floodgates open and I become a mess. It took a while for me to rein it in. Periods of extra stress tend to send me a little up and down.
I don’t think things have really settled for me personally since we became ‘homeless’, the betrayal and then the complete muppet fest that has proceeded it, finding out about PDA then realising I had no idea what muppet was until that point… It hasn’t been easy.

Where was I…. Oh,.. So yes I began to cry, which isn’t like me.
Then I listened to the specialist health visitor, who doesn’t seem to be able to do much, despite what they are actually meant to do!

Time to go…

Dinky refused to get her shoes on, hid under a table and refined point blank to go as she wanted to play more.
I coaxed her out from under the table and was told that they really needed us all out by 12pm. So it was 11.50 and I was trying, we had just cleared away all the games and toys that they had all got out, but dinky was in meltdown, she was shouting and throwing bits of games everywhere, I was trying to say that we needed to get back for Sky (our 6 month old puppy), she wasn’t having any of that. I knew I was getting nowhere, so I put her shoes and bag in my rucksack put if on my back, grabbed Dinky’s arm, lifted her over my shoulder and carried her out kicking, screaming, head butting, and spitting. She managed to say she was hungry, but I told her that I didn’t have any food, or money, but as soon as we were home she could have whatever she wanted for lunch. Nope.. Not good enough.
We were in a small car park, dinky was in her socks and no wrist reins. So it was inevitable that she would run off from me. She was screeching “DONT TOUCH ME!” I was trying to keep her safe from cars, but she was having none of it. She was going between attacking me and running off.
A lorry pulled in and I had to restrain her. She said I was choking her, however my arms were only acting as a cage I wasn’t actually touching her until she moved to get out, I was bitten a few times, I managed to move fast enough for most of them only to be nips, but she did manage to clamp down pretty hard on one occasion, leaving me with a massive bruise . She then became non verbal and just grunted. Which was not a good sign. She was running about and all I could do was keep her safe enough until she had calmed down. The only problem was I was starting to get an audience at the windows of the other businesses in this little area. So I again picked dinky up and took her out and around the corner.
Not a good move.
Dinky was still trying to get away and across roads, she seemed to have regained her verbal ability enough to say I was hurting her and shouting that I was a bad mummy. Well, one mum and child could not cross the street quick enough and we were amassing more onlookers. This one guy in particular was staring at me trying to calm Dinky down.
So I shouted at him
“DO YOU WANT TO COME AND HAVE A CLOSER LOOK? HAVE YOU NEVER SEEN A CHILD HAVE A MELTDOWN BEFORE?”
It wasn’t my finest moment, but I was so peeved that he was just watching my child’s distress. Finally Dinky had calmed down enough for me to get her shoes on her and for her to come with me. We were both filthy, her hair was a mess and we probably boy looked a little worse for wear. Then I saw the same man again and asked him if he would like to follow us home too… Muppet!

While dinky has been much calmer since I took her out of school the environment of the coffee morning and lunchtime- on top of an already out of sorts dinky due to the new puppy, and it was a disaster waiting to happen.
Of course this just made the day worse, I hadn’t recovered but Dinky got home and was happy to be watching lego ninjago on her iPad while playing with her lego figures. So I contacted the SEN caseworker who said they are looking at alternative placements, and I just fell apart.

It was on the cards for a while, but once I blow out, I am generally much better and can focus better as long as the stress doesn’t continue, then is is count down to the next blow out. However, I am normally pretty good at sensing it and try to shut down, but that is not always possible.

I know this post makes very little sense in the way it is set out, however, I do feel it is important to explain what was behind the post on Wednesday.

Now I feel much better.
I understand that actually I helped stop the other parent fighting for a dx like I have had to, and that is an achievement, I should be happy not peeved. Dinky’s assessment is coming.
I will give the LEA little choice in the matter of her statement and school placement. They should know by now that I am not one to stop at the first hurdle, I shall indeed make sure that Dinky gets what she needs. Yes, the other lad got in quickly and without a fight, but that doesn’t mean that if I do fight Dinky won’t get the same.

It was never going to be easy, and it is not, but I still wouldn’t swap my life. Dinky is amazing, and I won’t stop until everyone who works with her sees it, and sees how much she has to offer given the right support.

When fighting gets no results….

For those that regularly read this blog, they will know how much energy and passion I put into trying to get dinky the recognition and support she needs.

So days like today are such a kick in the gut and lead me to question why I bother trying.

Now, I’m going to put this in bold so that people understand

I don’t blame the children involved

Let me explain.

When Dinky went to her first school it was apparent she had additional needs and I was told there wasn’t a 1:1, that a lad in the year above with a diagnosis of ASD but without a statement was getting 20 hours of LSA and the other was for a child with a statement.
The lad who didn’t have a statement, his mum said to me a few months back
“ASD is different to being autistic, my son is autistic”
So it can be assumed that she hasn’t actually read a book about autism, she has just got the diagnosis gone back to work full time and the childminder I had for Dinky dropped her to look after this Lad.

Frustrating, especially when I lost my job due to no childminder, and I’m the one that recommended the childminder!

Then, when Dinky was having problems at the latest school, we began to use the office entrance. There we met another lad who struggled. On talking to his mum, she has seen my PDA aware keyring on my bag, looked it up and had her PDA lightbulb moment! I was so happy that my keyring fulfilled it’s purpose.
It becomes frustrating when the paediatrician who didn’t know what PDA was and was being retrained due to my complaint, diagnosed him with PDA a month or so back. Of course it is great for the child and the parent, but I have been trying to get this to happen since March, so it is bittersweet.

The lad is the same lad that gets support from the autism charity that turned Dinky down.

We have been in exactly the same place in the statement process all along, same PPM date, same statutory assessment date ect.
Today, I found out that he has a place in the special school I want Dinky to go to. I haven’t heard. I am pleased for him and his mum, the head teacher there really gets PDA, and he will do great there.

But the mum in me screams.

What about Dinky?

Why do other children get the nod over Dinky at every turn?

Of course I DO NOT blame the children, they are getting what they need as they should.

Makes me wonder what on earth I have to do to get Dinky the education and support she needs!