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!

Everything is a fight when your child has PDA!

It also doesn’t get any better for the adults, as Julia, author of the blog ‘me, myself, and PDA’ could tell you!

However as a parent of a 6 year old, I can only describe how much of a fight it is as a parent.

When I found out about PDA, I was actually happy that I could now explain why Dinky is the way she is. The criteria and the description felt like it was written about Dinky. However I wasn’t prepared for what followed.

I wasn’t prepared:
> to find diagnosis is a postcode lottery
> to find out that some places deny it is a condition
> to hear people say that it is not autism
> for the level of autism top trumps
> to have to speak to clinical directors and heads of services to get what should be standard.
> for professionals not to accept medical advice from other professionals
> to have my parenting questioned over and over
> the amount of research it is necessary to do in order to teach professionals about my child and PDA.
> to have autism services turn Dinky down because they don’t understand autism.
> for 2 broken down school placements before she had been at school for 4 terms
> for the stress that is getting a statement of educational needs
> for the constant battle that is trying to access support.

A few months ago I filled out a form for the countywide autism services, yesterday I received a phone call….

Lady : “Hello, I’m calling regarding autism services for Dinky”

Me: “yes”

Lady: “Unfortunately due to the fact that PDA is not autism, Dinky will not be able to access our services at this time”

Me: “but PDA IS an autism spectrum condition”

Lady: “unless the diagnosis says autism, then Dinky is not eligible for services”

Me: “but why is that necessary? PDA, according to the paediatrician, educational psychologist and the social communication team, IS a form of autism”

Lady: “I will have to put you through to my manager”

Me: “ok”

Manager: “PDA is not autism, unless the diagnosis says autism then she is not eligible for our services, the county council want to know that we are providing services for children diagnosed with Autism”

Me: “but our county DO accept that PDA is autism”

Manager: “sorry but only some professionals agree it is autism, she hasn’t got a full diagnosis yet anyway so she is still not eligible for services until she gets a full diagnosis because it might be taken away”

Me: “the only reason she hasn’t got a full diagnosis is because there is a backlog on the waiting list for final stage assessments”

Manager: “we shall keep her on file incase she does get an autism diagnosis, but it HAS to say autism. Ok. Bye”

I was furious, it didn’t occur to me during the conversation, but it did afterwards that there is a lad that I know didn’t have any diagnosis and he was allowed to attend the groups, even now he hasn’t got an autism diagnosis. Plus there is another child that I told the parents about PDA who had his Aspergers diagnosis changed to PDA a while ago, who attends the group as well. It seemed to be extremely unfair that Dinky was not allowed to.

So yet again I face a choice…
Do I
A) leave it?
B) email them and question the fact that other children in similar diagnostic positions have been allowed to attend, it should not be one rule for one and one rule for another?

Of course, to me there is only one course of action…. Action.

I’m not about to stand by and be fobbed off by an autism service because my child hasn’t got the ‘right type of autism’! Or because an autism service doesn’t understand the autism spectrum!

So I sent them feedback

To whom it may concern,

After a phone call this afternoon regarding support for dinky, I spoke to other people whose children use your services (the groups).
One of whom has not got a diagnosis, and another who has just had their son’s Aspergers Diagnosis changed to PDA.

Yet I was told that without a full diagnosis, or even with a diagnosis of PDA that dinky is not eligible for support from You.

I did mention at the time, and still insist that PDA is an autism spectrum condition. CAMHS wouldn’t see dinky as PDA is an ASC, and therefore the CDC have put her on the social communication pathway, of which we are waiting for the final stage, for an ASC diagnosis of PDA.

So to be told that an organisation that helps families with members who have an ASC, that my child, who the paediatrician, the educational psychologist, and the social communication team, all believe she has PDA but have to follow protocol, regarding diagnostic procedure, wouldn’t get support even if diagnosed PDA, is a little upsetting.

It seems mightily unfair that the other two families mentioned earlier can still access services, without a diagnosis or with a PDA diagnosis.

When I have spoken to 4 different members of local staff about dinky, and accessed behaviour 1:1′s all 4 have been accepting of PDA. They even have PDA information cards with the other information leaflets.

I would ask that this matter be looked into further please,

Regards

I received a phone call this morning from one of the 4 staff members who I have spoken to before said that she had seen my feedback form and wanted to call as she didn’t want me to be upset by it. She said that she agrees with me and as I quite rightly pointed out they do have other children accessing the services who do not have a diagnosis, and who have a PDA diagnosis. She said she will look into it for me.

I’m just so fed up of having to justify PDA to people.

I then received this email

Thank you for your email. I am sorry to hear you are disappointed with the outcome of your enquiry following your conversation with the Manager of the Children’s services yesterday. Unfortunately, the manager is now out of the office until after the Easter break. I will discuss your concerns on her return to work and respond at that time.
Regards

So I emailed back

Thank you

I have compiled a list of websites and included research where it shows that PDA originated and lives within the autism spectrum, I would appreciate it very much if this could be passed onto the manager when she returns.

http://www.thepdaresource.com

http://www.aettraininghubs.org.uk/wp-content/uploads/2012/05/5.2-strategies-for-teaching-pupils-with-PDA.pdf

http://adc.bmj.com/content/88/7/595.full

http://www.norsaca.org.uk/public-download-categories/pathological-demand-avoidance

- there are LOADS of documents as NORSACA are connected with the ENC which is the birthplace of PDA.

https://www.edgehill.ac.uk/documents/health/conferences/communication/LizONions.ppt

http://www.autism.org.uk/our-services/training-and-consultancy/specialist-training/pda-one-day-workshop.aspx

http://www.autism.org.uk/~/media/nas/documents/news-and-events/nas-conferences/pathological-demand-avoidance/pda-conference-plenary-session-fhappe-and-lonions.ashx

Regards

It just seems barmy that an autism charity would dismiss PDA so easily, but unfortunately they are not alone in doing so.

The national autistic society ALSO dismiss PDA, relegating the condition to the related pages section of their website to sit along side conditions that are not ‘on the spectrum’. Yet there are a number of pages on the site that say that PDA is an autism spectrum condition, or is ‘increasingly recognised as’ a condition on the autism spectrum.

So the PDA army have been leaving messages on the website feedback forms requesting that this discrimination of PDA end, by NAS putting PDA with autism and Aspergers on the main pages.

(If you have 2 minutes to spare and could also ask them to do so both myself and dinky, and all the other children and adults being discriminated against in the autism community would be extremely grateful :-) )

http://www.autism.org.uk/news-and-events/about-the-nas/contact-us/contact-the-web-team/website-feedback.aspx

I wasn’t prepared, but it won’t stop me fighting for Dinky and others like her

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Dinky and the new dog

As those that read this blog regularly, or follow the Facebook page may already know Dinky has a new 6month old puppy.
We picked her up from a house on last week, the poor thing was trampled on and was constantly in scraps with her siblings just to get a meal. She had never even been outside.
So it has all been a new experience for the pup. The other thing was the puppy didn’t have a name, so dinky called her Sky.

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It has been interesting.

Dinky already loves Sky, and wants nothing more than to play with her (even when the poor puppy is sleeping).

It hasn’t been all plain sailing, however I never expected it to be, although I must admit I was not expecting the first problem we encountered.

Dinky like many children with PDA is uncomfortable with constant or over praising, to the point where she wouldn’t accept a certificate for going on a tree top adventure because all the way round the staff were praising her (as is their job), and she didn’t like it.
So when I was over praising sky for little things like peeing on the puppy training pads, or for leaving the guinea pigs alone (she is scared of them and growled for the first day), and had to tell dinky off for one or two things within a short period dinky said “So sky is good, I am not! I should just go!”. Dinky was really upset, so I had to calm her down and let her know how much I love her and that it just happened to be that I said sky had done a good job at the same time as I had to remind her not to do something. So for a few days I had to equal out the praise.

Then came the integrated services visit and the refusal to walk Sky because of the demand of taking her for a walk, which I knew may be a bit of an issue, especially until she goes to a new school. She managed it in the end, and now I give her control of where we walk her, what we take and she gets to choose the treats if Sky behaves well (plus her own treat for being such a good dog owner).
We have had one more refusal to walk as my dad had been ramping up Dinky’s anxiety levels all day, so I left her with my dad and took sky out by myself.

Dinky has been a lot more anxious since sky’s arrival, which I kind of expected but not to this level. She has been a lot more avoidant with home stuff, and we have had flash meltdowns and hyperness to the next level.

Another issue is Sky’s distrust of other dogs. She barks at any dog she sees whether they are massive or tiny. I tried to socialise her with other dogs but she spent the whole time barking at them and trying to fight them. Poor dinky kept running off with her hands over her ears screaming, which doesnt help the situation as she is tugging on the wrist reins and sky is tugging on the lead and I’m trying to calm them both down, but both are making each other worse. Nightmare! So I have a dog trainer coming over tomorrow to give me some pointers on how to gently socialise Sky, I hope that by having the lady explain it to us that I can ask dinky to help me remember so that she knows what I am trying to do.
Walking with the pair of them is generally tricky, as Dinky on the reins and Sky on her lead can get tangled or pull in different directions, fall over each other or I trip on them! I have a system now though, and it seems to be working.

Dinky is nice and calm when sky is next to her or on her lap. The two of them together on the field is lovely. Dinky runs and sky chases after her, dinky giggles like mad, which always makes me smile, it is the same when we finally got sky to fetch, dinky was giggling like crazy. Not much gets her quite that excited,

Overall, I think that Sky will be good for Dinky.

A few people have asked if I can handle a puppy as they are a lot of work. To be honest, this week we have had her, she has been easy, she is not a patch on Dinky.
I don’t know whether I just got an easy pup, or just used to the constant that is PDA.

Either way, it’s nice to have Sky around, and I hope Dinky will calm down once the novelty of having a new puppy wears off.

You lost your knife? Oh there it is, in my back, again!

Yesterday I commented on the lead professional saying I blow hot and cold.

Well, today is the perfect example of the type of thing that makes me completely freeze out muppets.

Today I received our closed case assessment paperwork.

Unusually it is not actually the social worker, she has actually been pretty good, and tried to understand what is going on. I’m pleasantly surprised as my preset is distrust of social services given my previous involvement with them as a child.
Now I do not see them as the ‘bad guys’.

Those who follow this blog will know that the school have been difficult from day 1. The Muppet (HT) had never met dinky, nor me and made a judgement of attachment disorder. In the TAC meeting, the following month, she said she will fix dinky by the following school year… Well, that prediction was off… By a country mile! She has scoffed at the notion of PDA, even when Dinky was given a provisional diagnosis of PDA, she still wouldn’t accept it, and nor would the SENCO. Battle after battle with the school.
Then they called social services about over sexualised behaviour, I was sceptical but accepting that if that is what they thought, that it was an obligation to contact SS. What I wasn’t so happy with is them mentioning Dinky’s behaviour and refusal to comply and refusal to come home some afternoons after school, WITHOUT mentioning the provisional diagnosis of PDA!
So I refused to talk to The muppet again.

The lead professional at first was completely on our side, said she could definitely see PDA fitted Dinky, however she has been increasingly rubbish.
Her boss turned up at the TAC after the provisional diagnosis and said “why should the school do anything, it is only provisional?”
So much for needs based!

So we come to the social workers assessment.

On talking to integrated services it was said

there are concerns about mums ability to parent and she has asked for respite….. There was also the issue that mum has been heard to possibly slap Dinky so they feel this should be considered for assessment

From the school

school have commented of mothers behaviour being ‘very strange’… Requesting respite suggests she is struggling with her but wishes to present as capable of caring for her despite the schools worries

The social worker saw right through this rubbish, and said

I am pleased that you have been open and honest with me and I can see how focused and passionate you are about dinky and her needs, I like the fact that you fight for what you think is right for Dinky.
I am worried about Dinky’s behaviour (in regard to the over sexualised behaviour)…
I also appreciate how hard it has been for you to contemplate the fact that she may have been sexually abused, appreciate your openness and honesty about this.

Regarding education, I understand what your frustrations regarding the school and the staff at the school, however I’m worried that since you have taken Dinky out of school, dinky will be isolated from her friends and this maybe upsetting and confusing for her.

There is a judgement scale
0= immediate action is required to ensure the safety and the protection of the children
10= the child/ren are safe enough and the ongoing involvement of a social worker is not required at this time.
She scored an 8

Reasons

there are many complex issues that have been identified from this assessment. Firstly it is a working hypothesis that Dinky demonstrated the sexualised behaviour as a result of being sexually abused as a younger child. From consultation with x (therapist), it is possible that this could now be emerging from through her behaviour….. (Stuff about when she has been unsupervised, and actions taken). Despite this hypothesis, there is no evidence that dinky has been harmed in any way and I do believe Dinky’s mum would act protectively and appropriately if this were/ had been the case.

With regards to Dinky’s PDA, it is clear that her behaviour has escalated, which has led to being excluded from school for 5 days. Dinky’s mum has become frustrated with the lack of progress and the difficulties that she had had conversing with the school and has now taken dinky out of the school. Although Dinky’s mum reports that dinky has been calmer since this occurred, dinky is now isolated from her fellow classmates and has limited social interaction. However this remains largely an educational issue.

There have been many strengths identified during the assessment although it is clear that there are complicating factors such as the families isolation, lack of support network, and the stress that caring for a child with Dinky’s needs brings.

I almost choked when I read the managers comments!

this is a good and thorough assessment that clearly identifies the strengths, difficulties and complicating factors in this small family unit. Dinky is a complex young child who has a number of needs with numerous professionals involved to try and address these.
I commend mum for her determination and focus on her daughter but am worried now that she has withdrawn Dinky from school as I am not sure this is in her best interests and will be extremely tiring for mum. I understand dinky is being assessed for SEN and it maybe that a ‘special’ school is recommended as a result but in the meantime I would like to see the relationship between mum and school rebuilt. (hahahahahaha)
Whilst dinky displayed what is perceived as sexualised behaviour she also displays other unusual behaviours too such as licking door handles; it is difficult to say if she has been abused sexually but it is understood that any opportunities would be extremely unlikely due to the families isolation.
On balance I do not think there is a clearly identified social work role at this time…( blah blah about getting professionals together to recommence CAF)… To make clear this departments rationale. In particular the issue of education and the families isolation should be addressed as well as Dinky’s health needs. I wonder if short breaks scheme would be of value to the family.

When hell freezes over regarding the school!

We are already on waiting lists for the short breaks scheme they were talking about.

I am beyond furious about the ‘slap’ comment. As someone pointed out to me, it is not actually illegal to slap your children, however, I did nothing of the sort!
How am I expected to work with muppets who have no idea about my parenting styles and what I would and wouldn’t do? How am I supposed to work with them when they go behind my back and say this crap?
How can I work with them when they think asking for respite is actually a sign of diminished parental ability?

While the social worker seems to get it (mostly) the rest do not.

Dinky didn’t have friends at school, she has not mentioned them once, so the lack of school is not an issue socially and I have been educating at home, which is not illegal either, but this is in no way wrong! Dinky has spoken to zoo staff about the animals she likes, she has touched sea creatures and watched tigers, lions, monkeys and penguins being fed. Tell me how many other 6 year olds at the school have done that! (Dinky’s school is in a ‘deprived’ area- has a bad reputation- and for good reason, so I doubt very many have).

I have also taken dinky to the local parks, and her SN group, plus the SN Saturday club that runs fortnightly at our local adventure park. No one bothered to ask me what I was doing, just thought that I wouldn’t take her out. I have proven time and time again that I will go way out of my comfort zone for dinky, yet they don’t think I would try to meet her needs?

I’m not surprised at the school, but I’m annoyed at the lead professional, she was only here yesterday and is proving to be extremely two faced.

In any case, it has AGAIN been proven that I don’t hurt dinky and I do my best for her, and that her behaviour is not down to poor parenting.

Just wish I could feel like I am not going to be stabbed in the back again after the next meeting.

I don’t trust them anymore.