Wednesday, 9 July 2014

Busy times for Duck.

To start, I have chosen a poem. I love this poem.
The misunderstood child by Kathy Winters
I am the child who looks healthy and fine. I was born with ten fingers and toes. But something is different somewhere in my mind, and what it is, nobody knows.
I am the child who struggles at school, though they say that I am perfectly smart. They tell me I'm lazy, can learn if I try, but I don't seem to know where to start.
I am the child that won't wear the clothes which hurt me or bother my feet. I dread sudden noises, can't handle most smells, and tastes -there's few foods I eat.
I am the child that can't catch a ball, and runs with an awkward gait. I am the one chosen last on the team, and I cringe as I stand there and wait.
I am the child with whom no one will play - the one that gets bullied and teased. I try to fit in, I want to be liked, but nothing I do seems to please.
I am the child who tantrums and freaks over things that seem pretty and small. You'll never know how I panic inside, when I am lost in my anger and fright.
I am the child who fidgets and squirms, though I am told to sit still and be good. Do you think that I choose to be out of control, don't you know that I would if I could?
I am the child with the broken heart, though I act like I don't really care. Perhaps there's a reason God made me this way? A message he meant me to share.
For I am the child that needs to be loved, and accepted and valued too.  I am the child that's misunderstood, I am different, but look just like you.
Not all, but so much of this fits Duck.
We have lots of issues with uncomfortable clothing, wet clothing and itchy clothing. Many of our friends have witnessed Duck reacting to certain stimuli, from a few drops of spilt drink to odd smells and itchy clothes. Duck had an assessment for sensory issues a few weeks back. In the waiting room for her assessment, she spilt her juice over her clothes. This led to a huge panic attack/tantrum both in the waiting room and during the appointment. The assessment ended with the Occupational therapist saying 'it seems fairly obvious what the issues are'.....
Until today, we have always kept a lid on her clothes issues in most places. There have been a few incidents of Duck being unable to don her brownie uniform over the years, but otherwise as far as uniforms are concerned, we have managed to keep things working. We use a lot of distraction, encouragement and bribery, but its gone well.
Today did not go well. Duck was in a good (but anxious) mood this morning. She complied with her normal routine, had a bath, got dressed into her uniform...then got undressed, back into pyjamas! She was crying and scratching herself all over saying the clothes were itchy. We carried out the occupational therapy as we do 5 times daily and hoped it helped. I encourage Duck to try her uniform on again, which she did, but removed it immediately, again crying and scratching. I calmed her by saying that we could take her clothes into school and have a chat with them about it all. Pacified by this, she agreed.
We got to school and the first person I saw asked how Duck had been. I replied saying this morning was not good for her and she wouldn't get her uniform on as it was itching too much. I was astounded at the reply. I was told "Oh she is really playing you up!".  NO! No, no and no! This is not a child playing me up. Sure, she can and does have times, but its obvious when she is playing up and when she is really distressed. I managed to stay reasonably polite! I told her she is not playing me up and she has several sensory issues which affect her and today was a day she was struggling. Then I walked out of the office and back to my car where Duck was waiting, refusing to get out. That attitude was exactly what I was worried about. There is a huge difference between a child 'playing up' and a child struggling, they need totally different handling too. The SENCO appeared and I explained what was happening with Duck and what had just been said to me. To say I wasn't happy is an understatement. I told the SENCO that if Duck was going to be treated with the attitude of 'being difficult' that I would not be leaving her in school that day. Thankfully, the SENCO agreed that trying to tell Duck off or punishing her would only serve to aggravate the issue and we managed to get Duck into school. I got a call later to say it had taken a while, but Duck was in uniform and in class sometime around 9.30 and that she was settled -thankfully.  9 days left of this school year...
As far as everything else goes, CAMHS have failed to diagnose Duck with autism. The lady who assessed her has left and can't explain why but she diagnosed 'social communication difficulties and anxieties'. On looking at the assessment, Duck scored 9 out of 10 in the ADOS test  which gives a clear autism diagnosis. This diagnosis has been over ruled, apparently by the impact of anxieties. Oddly the ADOS includes anxiety as part of the assessment as its known to be displayed in the vast majority of autistic children. There are 3 options for anxiety in the test. Firstly no signs, secondly, mild signs especially at the beginning of a new part of the test and thirdly high anxiety throughout the test. Bearing in mind the ADOS score has been over ruled due to Ducks anxiety levels, you would be right to think that Duck was graded with the third option, of high anxiety....but no. Seriously! Duck was graded as having mild anxiety during the test. So the test was clearly indicating autism with mild anxieties. Yet the test result was over-ruled due to high anxieties??? And CAMHS have been unable to explain why as the person has left and nobody else can explain other than to say how experienced she was.
So now we have a GADS test showing highly for Aspergers, a WISC test confirming concrete thinking, poor vocabulary and reasoning, preoccupation with specific rituals and routines, a BECKS youth test showing moderately high anxiety and anger, an ADOS test showing clear autism, some sensory processing issues. All of these point at autism,  yet no diagnosis within CAMHS.
We have now been referred to the NHS Patient Advisory Liaison Service to see what they make of it all!
Finally for now, the Educational Psychologist visited Duck. He ran a test around Ducks literal thinking which is an area school and I have different views on. I claim that Duck takes everything literally, doesn't get most jokes and doesn't pick up on sarcasm. School say she is fine in all areas. So, the test consisted of around 20 questions and each question had a multiple choice of picture answers. An example is the question was 'Where am I if I am stuck in a traffic jam?' The four pictures were an empty road, a road with a little traffic, a road with a traffic jam and a road with a few cars, a big jar labelled 'jam' and a jam spillage spread over the road. Duck chose the jam one. In fact, out of the 20 questions, Duck chose 19 wrong answers. She took the literal meaning in all but one. I hope by now, the SENCO (who has worked directly with Duck for 3 years) has got over the shock!
Days like that remind me that this is all coming together, slowly, very slowly....
Finally, here is a link to 15 minutes of a radio 4 program called 'All about the mind'. Hear you can listen to a mother describe her daughter and the battle she is having to get her child diagnosed and therefore supported. She is describing our situation so well, it could be me in that seat. The only difference is I have a private diagnosis. Hear why she has chosen not to go down that route. Then hear what the professionals say about the autism assessment for girls. Its an interesting listen.

Saturday, 26 April 2014

Why has Duck so suddenly changed?

Another friend asked me something about Duck the other day, it made me think, if a friend who has known Duck since she was a baby asks the question, how many others are? She asked me this;

"Why has Duck suddenly changed so much at school? She never used to be a problem"

Wow, an interesting question from someone who has watched Duck grow and seen lots of difficulties, but a fair one too, so here goes with the answer.

Before school/nursery we socialised lots, playgroups, parks, soft play. Duck got as much exploration as every other child.

I shall begin at nursery. Duck separated badly at nursery. She was described as not mixing with other children and responding only to adults. Shortly before she left nursery she made a friend. Just one. Then she moved to school and left her only friend behind. Duck did not understand why.

Reception, Duck separated badly a lot of the time. Duck could read before starting school, however, because she did not know all the actions to the 'Jolly Phonics', School started her from scratch and effectively moved her backwards in her reading. Duck did not understand why. Her comprehension difficulties were starting to show. For example, school asked all children to learn their address. Duck spent 3 days refusing to attempt to learn it, saying she didn't need to know but the teacher wanted me to go and give her the details as the school did not know where we lived.  I had to have a chat with Duck and the teacher together to get her to explain that Duck needed to know her address and the school already had it. These sorts of communication incidents have continued. I think I could write a book of where Duck has failed to understand what has been said to her and given me totally the wrong message!

Year one. First parents evening, the teacher said to us 'Duck is not mixing with the other children as much as is expected'. No surprise there! I gave the school a huge report pre-reception explaining all of her difficulties! They had a few separation issues and despite a lovely sticker chart (which failed because Duck felt the sticker charts were for naughty children and she was not naughty), she regularly had to be peeled off me in the morning's. She had lots of friendship issues but eventually, she made a lovely friend. She found a lovely sweet girl and they clicked, it was the first friendship Duck made in school by herself. By the end of year one, her friend had left and moved to a different school. Duck didn't understand why.

Year two. This year things got interesting! Ducks difficulties began to show to much more of an extent than previously. There were a few incidents which demonstrated some behavioural issues with Duck. On one particular occasion, Duck proudly went into school with a brand new water bottle. She has won it at the fete, it was on with a tube for freezing inside to keep her drink cool. She left me and walked in really proudly with this posh bottle. Unfortunately, she slipped on a step and fell, smashing the bottle into a thousand little pieces (It was plastic, but plastic can still smash). The teacher and I were outside the school, the first we knew was one hell of a scream followed by Duck running out of the school, past another year 2 teacher, past her year 2 teacher and grabbing onto my legs screaming 'MUMMY, MUMMY!'  and very little else that made sense. Another teacher appeared at the door and told me the water bottle was smashed but Ducks poor communication meant that she was unable to explain to me why she was upset. We calmed her down and took her inside, clearing up the bottle and promising a new one at the end of the day. Eventually she calmed down enough to go to class.  The next term I was waiting for Duck at the end of the day. She was one of the last ones to come out, which was odd as I was always there and always ready for her. She eventually appeared in her PE kit with her TA.  The TA was somewhat different in her mannerisms, I did not understand why. She explained that Duck had split a milkshake on her uniform during lunch time and was therefore in her PE kit. Knowing how sensitive Duck is to that kind of thing, I responded by saying to Duck 'Oh no, I bet that upset you didn't it, don't worry, we can get everything sorted at home'.  Later, Duck told me she had a total panic attack over it, because she was so upset, and had told the teachers that I would be cross with her. (Just for the record, I have never got cross with a spillage. Its part of being human that things get spilt, lets face it, adults spill things too don't they?) Now the penny dropped, I was being watched for my reaction because my little Duck was so upset that she convinced them I would be angry. :-( Her communication difficulties led her to give totally the wrong reasons to the teacher. If her communication was better, she would perhaps have managed to say 'I really hate spilling wet things on me and it makes me angry' but she couldn't get those words out. All that came out were 'Mummy' and 'Angry' and a vast array in between.  The final big concern in year 2 was her eating. It was 3/4 weeks before the year 2 SATS. Duck became anxious over choking and refused all solid food. Duck has never choked. She was referred and treated under the GP and this issue is still ongoing, however, it started because she was nervous about her SATS.

Year 3 was a fairly calm year. We spent most of it going backwards and forwards to the anxiety clinic where Duck was referred to for her eating and other anxieties. Duck had more friendship issues this year. One girl was particularly unkind to her, she hit her a couple of times and kept calling her names. This led to a few incidents over not wanting to go to school and the beginnings of separation issues again. But by the end of year 3 Duck was quite calm and stable.

Year 4 started well, Duck had the same teacher, which I felt was good for her as she was still doing work on the anxiety issues and the teacher was offering consistency in school too. However, by the Easter holidays, Duck was obviously struggling. There were more friendship issues. On one occasion, a different teacher came and spoke to me because Duck had written names down of the children who were being mean and the school did not like her doing this. Ducks behaviour became more difficult at home and she was obviously becoming more anxious. It was in the May that we went back to the school and asked for a referral as we knew Duck was not getting better, she was still struggling socially, with her communication and understanding and with her flexibility in attitude.

Year 5 started badly. Duck did not like her teacher from the first time she met her. Duck was separated from her only friend (again) and she did not understand why. Ducks anxiety was high and she started with some severe separation issues from the first month. These issues have progressed. Duck is now regularly aggressive to the staff or myself when I drop her off and is under CAMHS psychology for anxiety issues. She had a private assessment in February and was diagnosed with Aspergers. She is highly anxious and very unsettled. 

So that's where we are. Duck has not 'Suddenly' changed. Yes, she has got worse recently.

If you refer to the Geneva Centre for Autism, Duck getting worse is explained by this;

"Whilst difficulties are present from birth, they may not fully manifest until the social demands exceed their limited capacity"

When I discussed this with CAMHS, she said exactly the same is true with children with severe anxieties.

Furthermore, the anxieties, which are a huge issue for Duck, are explained by this (from Tony Attwood, renowned autism expert).
40% of children with autism suffer from anxiety, however, as much as 65% of children with Aspergers suffer from anxiety.

Tony Attwood also explains the Jekyll and Hyde of autism, which clearly defines why Duck has slipped unnoticed at school, whilst displaying most of her difficult behaviour at home.

I describe some children with Asperger’s syndrome as being a ‘Dr Jekyll and Mr Hyde’ – an angel at school but a devil at home. This has been described in the literature as masquerading (Carrington and Graham 2001). Unfortunately, a parent may be personally criticized for not being able to manage his or her child with Asperger’s syndrome at home. A teacher reports that the child has exemplary behaviour in class so the behaviour must be due to a defect in how the parents manage the child’s emotions. It is important that school authorities recognize that children with Asperger’s syndrome can sometimes consciously suppress their feelings at school and wait until they are home to release their anguish on younger siblings and a loving parent. Such children are more confused, frustrated and stressed at school than their body language communicates, and the constrained emotions are eventually expressed and released at home. The cause of the problem is the child not communicating extreme stress at school, and not a parent who does not know how to control his or her child.

The diagnostic assessment should also include an examination of any examples of inappropriate or unconventional emotional reactions when distressed, such as giggling (Berthier 1995), or a delayed emotional response. The child may worry about something, not communicate his or her feelings to parents and eventually, perhaps hours or days later, release the build up of emotions in a ‘volcanic’ emotional explosion. Such children keep their thoughts to themselves and replay an event in their thoughts to try to understand what happened. Each mental action replay causes the release of the associated emotions and eventually the child can cope no longer. The frustration, fear or confusion has reached an intensity that is expressed by very agitated behaviour. When parents discover what the child has been ruminating about, they often ask the child why he or she did not tell them so that they could help. However, such children are unable to effectively articulate and explain their feelings to alert a parent to their distress, and do not seem to know how a parent could help them understand or solve the problem.”
Also, the following is from Dr Luke Beardon, also a known autism specialist
Dr Luke Beardon.txt
Is it possible for children to display different behaviours at home compared to school?
It is very clearly documented that many children with autism (though not all) will display
considerably different behaviours in different settings. This can be as a result of a wide range of reasons, from central coherence abilities, to environmental factors, to differing levels of stress in different situations.
A reasonably common pattern in terms of school/home behaviour is that the child may appear to present with no problems at school, but at home there can be major issues in terms of behaviour.
Often, the result is that either school simply do not believe that the child they see at school can be displaying the reported behaviours at home, or that school erroneously believe that because the behaviours are only seen at home then the causing factors for the behaviour must also be situated there. This is not always the case, and it is of imperative importance that all parties involve recognise the serious nature of high levels of distress, and recognise that all aspects of the individual’s life may be a contributory factor towards high arousal – which, in turn, may manifest in behavioural issues. This can lead well into adulthood – for example I support several people whose behaviour at work demonstrates no problem at all, whereas the reality is that they are in high states of anxiety and stress, to the point of self injury at home, and, in some cases, anxiety and depression to the point of suicide. This demonstrates just how important it is that all concerned recognise this reasonably common
autistic behaviour as early as possible, in order to support the child well. Just because a child has the ability to ‘mask’ their autism at school does not mean that they are not severely affected  by their autism on a daily basis.
I hope this answers your query – do not hesitate to forward this email onto anyone you feel may benefit from it. I have attached my CV in case that is helpful in terms of credibility in my answer.
Best wishes,
Dr Luke Beardon
Senior Lecturer in Autism
The Autism Centre
Sheffield Hallam University
Its quite clear from the whole list of events that Duck has not actually changed as much as she appears to have. She has merely reached her limited social capacity. The social demands, the communication issues and the immense dislike of her teacher have all combined to make one explosive child. She isn't coping any more. She has been saying to anyone who has actually appeared to listen since October that she is not happy and she does not like her current situation. She has told behaviour support, autistic support, the school SENCO, ourselves and even her teacher directly how unhappy she is.
She has tried really hard to communicate her feelings the right way. However, her situation has not changed. Behaviour is a form of communication. A child who is not being listened to or who cannot make themselves understood verbally will progress to poor behaviour in an attempt to make themselves heard. Ducks behaviour is her expressing that she is not coping and she needs support.
It really shouldn't be as difficult to get help for a child as it currently is.

Tuesday, 15 April 2014

Pushing for action within the National Autistic Society

In supporting PDA we (the PDA army as we are commonly known) are constantly banging our heads against walls in getting PDA diagnosed for those who need it. The main reason is that its not in either the American or British medical directories. It is, however mentioned in the NICE guidelines which some counties use (Berkshire don't).  The NICE guidelines are not official for diagnostic purposes so areas can pick and choose from them which is why we currently have a postcode lottery for diagnosis.

However, we also have another problem. When people ask the professionals about PDA and diagnosis, the majority get the same reply.  "PDA is not autism, its a condition related to autism".  Yet, the NAS website clearly states that it is increasingly recognised as part of the autistic spectrum.

So why the confusion?

Part of the confusion is simply the lack of understanding. Another part of the confusion is the awful state of random diagnosis and recognition of the condition. The biggest part of the confusion, we believe is the National Autistic Society web site.

Despite clearly saying PDA is part of the autistic spectrum, the NAS website fails to mention it alongside autism and aspergers in its main headings. PDA is hidden away in related conditions, alongside ADHD, epilepsy and dyspraxia.

Lets be clear. PDA is a type of autism. It is NOT a condition related to autism. It falls on the autistic spectrum and should be as easy to locate on the NAS page as autism and aspergers.

Several people have written to the NAS and asked them to amend it, but as yet, none have had a reply.  We have found a link on their website asking for feedback from their pages. So we have left feedback. In fact, I think a lot of us have left feedback!

We would really like to see their website changed to reflect PDA in the correct manner in which it should be. PDA children meet the triad of impairments of all other autistic children. Sometimes its harder to see because they are able to mimic social behaviours and 'blend in'. But its there, they are autistic and we really need to let everybody see that.

If you are willing to help, please follow the link by clicking HERE. It will take you to a form to fill in with your feed back. We would really appreciate as many people as possible filling the form in and putting something simple like

 'Please change your website to place PDA alongside autism and aspergers instead of in the related conditions'

There is volume in numbers. It will be a big step to get this changed. It will be a start in the right direction of getting PDA recognised. And it will mean families of PDA children can point to the NAS website and say 'It is autism'

Sunday, 13 April 2014

People need to think before they speak

And so it continues!
We are half way through the Easter holidays and so far its been the hardest times with Duck to date.  Her social anxiety has been awful. The week before school broke up there was an incident at school. Its currently being investigated by the governors because it should not have happened. The result is that Ducks fear of crowds, people and general social life has increased. Dramatically increased.
So far during the holidays Duck has had anxiety attacks over almost everything we have done. From going to vast spaces like national trust parks to busier places like Lego land, cinema, refusal of joining in a brownie activity and even a panic attack at visiting some of our best friends.
When I say panic attack, I really mean it. She can't breathe properly, she crys her chest hurts, she feels sick and starts flapping and panicking. The symptoms are real. The panic is real. People who have never suffered anxiety won't understand. She will try and push me or drag me to take her home, on some occasions she was violent, blindly lashing out in fear. Trying to negotiate is almost impossible. Trying distraction sometimes works but not very often. Every day she asks what we are doing, asks to go to places and do things yet when we get there she just can't control the fear.
If only the person involved in the incident at school saw the impact it had on Duck. Its left her in a really bad way. I have no idea how things are going to go when school starts again. But I can tell you the anxiety about it is already building for Duck. To anyone who saw or heard about the incident, on the surface it wouldn't seem anything major nor anything to give cause for concern. However, to those who know how Duck is and how everything is affecting her, it was huge. Its probably also worth mentioning, the person involved was given some really specific 'handling' guidelines for Duck less than 2 weeks previously. The guidelines were quite clear and the incident was a complete contradiction to this.
On other topics,
We put in a statement application for Duck to get more support at school. We now have to wait to see if she will be assessed. They have until 24th April to decide if they will assess her, then they have a further 20 weeks to assess and decide whether she needs 1-1 support. Its a long time to wait for a child who is so obviously suffering.
I have also completed my Level 4 Diploma in Child Psychology which I have been working on for a while and I passed with a distinction. I am now spending my spare time studying autism and PDA.
I also had an unannounced OFSTED inspection the other week, in case you don't know, I am a child minder!  (I had 2.5 hours notice as she had tried to catch me on the hoof but I was always out!) I managed to get a 'Good ' grade which is amazing for the length of preparation time. I have been child minder for 7 years or so and I was not due and inspection for another 2 years, however they can do random and unannounced visits if they wish and because of the recent involvement of social services, Ofsted have to follow up with their own inspection. I was pleased they did. Its another tick in the box, and it maintained my previous grade. I couldn't ask for more really. (Just for the record, Ducks school had 2 days notice of their last inspection (November 2013) and got a poor grade, well, the terminology was 'Inadequate'. It makes my 'Good' with no notice seem so much more valuable.....) 
I had a meeting with CAMHS the other week too. They have explained (kind of) all the errors on the letters I was sent which didn't make sense. I spoke to them about PDA and why they don't diagnose. She said that although the condition existed, it was not their policy to diagnose any condition until it is in the manual.  When asked why other areas do, she said they all make their own choices. However, she also agreed PDA and ODD are not the same and that a PDA child should get a diagnosis of Autistic Spectrum Disorder with Demand avoidance traits. I have yet to hear of this diagnosis in Berkshire though. I do wonder if that will actually happen!
I am still waiting for Ducks official feedback from her ADOS autism assessment. Its already been 9 weeks.  I know she wont get anything like PDA because she is a total Jeckyll and Hyde and is FULLY compliant for people she doesn't know. There would have been no signs of PDA what so ever. I also know they found her complex. I did, however, send them a copy of the private assessment we had undertaken on Duck. I do wonder if they have used any of this evidence in the CAMHS report. If so, they will have to diagnose Duck with ASD (Autistic Spectrum Disorder) In Berkshire, they don't separate the types of ASD. They just classify it all as under one umbrella. The point being that the childs needs should be met regardless of a diagnosis so they don't need anything more specific. I see the logic of this however, I also know that the handling techniques for different types of ASD are not the same. By giving specific a more specific diagnosis, you are more likely to find the right ways of managing each child.  This autistic spectrum is certainly vast and complicated. 
CAMHS have also called and offered Duck some sessions with a child psychotherapist, which started last week. First impression is that its made Duck more aware of her anxieties which doesn't feel great but I hope the plan will be to reduce them over the 12 week course. Week two is tomorrow morning. Duck doesn't want to go....
Ready for a long week ahead, lots of chocolate and wishing a great Easter for everybody. :-)

Tuesday, 1 April 2014

National Autism Awareness month. April 2014

So we are into the National Autism Awareness month, a time to try and wake people up the fact that autism is not going away, in fact, its growing in numbers. The spectrum is slowly becoming better known to professionals and they are able to pick up on autism in children who would have previously been missed (like Duck!). This is causing the numbers to grow. Its being said now that in the UK there could be as many as 1 in 100 children who are on the autistic spectrum somewhere. That's a lot. And as more children are identified, this number will keep rising.
There is a HUGE need out there for diagnosis and support. The post diagnosis support is limited and the pre diagnosis support is almost non existent. 

The National Autistic Society are trying to improve this. They have their own schools which cater for children on all aspects of the spectrum and they work closely with each individual child to ensure they reach their full potential. The offer support groups, online support, legal advice and general advice along with much, much more.

I don't believe autistic children fair well in mainstream. I don't believe the schools have the facilities to offer the right support for an autistic child, even with a classroom assistant. Perhaps that's just my experience?

For Autism Awareness day I have set up a Text-Donate just giving page. I will be (gulp) posting a photo of me in my onsie along with a 'tag friends, donate and share' system similar to that of the recent Cancer campaign which raised over £8 million.  I am realistic, I know we are really unlikely to reach that amount, sadly. Thats because not as many people are affected by autism so the willingness to donate will dwindle. I have however, set a target of £1500, which is not going to be easy. So when you see the pictures circulate, please would you join in and share? If people just donated £1 we would raise so much to help.

Things with Duck are not going too well. It appears school seem unwilling to accept the diagnosis. I guess this by a form I received which had a section for Special Educational Needs. The school had put in the space 'Possible Aspergers- un diagnosed'. I called them. I suggested they contacted my psychologist and raised the 'un-diagnosed' part with her. I was told they would do that. I have no idea if they did.

Meanwhile, Duck is finding class and the rules in class harder and harder to follow.  Just the other day, the teacher asked all the children to be quiet. Guess who kept talking? Then, when asked again to stop, she immediately rolled her eyes at the teacher. (one of her more annoying traits). This led to the teacher (according to other children who witnessed it) shouting at Duck in front of the whole class to 'Stop rolling your eyes at me young lady'. Which upset Duck and was followed by a chair being slammed into the ground, a bag being thrown and some verbal abuse about how Duck hates school and especially the teacher. I am thinking they are lucky the chair was slammed into the ground and not elsewhere.  I am also thinking that school really need to read the signs and work out that Duck isn't coping and that for as long as the teacher keeps yelling at her in front of the class, her behaviour will worsen. Don't get me wrong, I totally understand that Duck shouldn't have rolled her eyes, and yes, I agree the teacher should have dealt with her about it. However, I would have done it differently.

Needless to say, the next day Duck didn't go into school very well. Actually, she was fine for me at home, but as soon as we got to the school and the teachers appeared, she started. I got away and left the school as quickly as I could. I could hear her screaming and hitting the door as I left. The school called me later and told me she was the most aggressive ever, throwing things, hitting people and generally unhappy. I said I wasn't surprised she was bad, teacher shouting at her was not the ideal way of managing her behaviour. I have no idea how next week will go.  The form I previously mentioned also had a section saying 'Is pupil at risk of exclusion?' The school have filled it in with a 'YES'. I don't think the violence from yesterday will have helped in any way, shape of form.

For anyone who is interested in supporting our campaign for National Autism Awareness month, you need to take a pic of yourself in your onsie and post it to facebook or twitter with a note saying this...."I am supporting National Autism Awareness month. If you are nominated, you need to upload a picture of yourself in your onsie, pyjamas or dressing gown and donate to the NAS.  Text AUTM54 followed by amount (eg AUTM54 £2.00) to 70070." Then tag your friends and get spreading. The donation line is live now. Lets do this. :-)

Here is my picture, I have donated. Have you???
Prefer this can actually read the sign....

Friday, 21 March 2014

Diagnosing Duck.

I have not written for ages, there has been so much going on that I just have not had the time or the energy to write.  Blogging had been all but forgotten until this evening. Someone I hadn't seen for a while said something to me. It was only a small comment in a very brief conversation but it was something that made me realise why I was blogging in the first place and that I had to keep fighting. I figure you have two choices, you can either fight for your children on the basis that nobody else is going to, or you can just give up. I don't do giving up very well.

So here goes with a (not so) quick catch up and hopefully, more regular updates.

Life has been extremely busy here, with work, Duck and Son, appointments all over the place with various 'professionals' and the never ending job of being a mum.

Social services whom a 'friend' so kindly called came and went. The issues raised were all justified, funnily enough.  Lots of the issues raised were things I had mentioned in blogs. I guess its nice to know people are actually reading my waffle. :-) Its also nice to know people are concerned enough to act if they think there is a child abuse issue. But its now time to move on.

So on to the appointments.... Duck has now been assessed by CAMHS, she was also visited twice at school by their psychologist. CAMHS use the old and very outdated ADOS test for autism. I have never expected this to pick up on Ducks traits. The ADOS was designed 25 years ago to pick up autism in classic cases in boys. Duck is neither classic nor a boy. The ADOS has been updated a few times, so it does, on occasion pick up on some more subtle traits but I have never expected it to pick up on Ducks behaviours.  I don't have the results yet. I have no idea how long CAMHS will take.

We had Duck assessed privately too. She took 3 different tests with our private psychologist. She was tested under the WISC which is an intelligence test, under GADS which is an aspergers test, and also the Beck Youth Inventories test which assesses for depression, anger, anxiety, disruptive behaviour and self concept.

Duck did well in the intelligence test (we always knew she was clever) She scored an IQ of 96 which is average. She showed some difficulties with her perceptual reasoning. She showed difficulties with verbal comprehension. Low verbal comprehension results have been associated with problems in language and social reasoning. Despite these scores, her overall score on this test was not typical of Autistic spectrum or Aspergers, however, there were certain characters which could indicate such a disorder, such as those above and her concrete response, limited social reasoning and heightened visual attention.

The GADS test obtained a score of 97, which means a high probability of Aspergers and on the Beck, she scored moderately elevated anxiety, lower than average self concept and mildly elevated anger.

None of the results surprised me.

Ducks final outcome of all the tests taken into account the characters from the WISC which could indicate an autistic spectrum disorder, the GADS test which did indicate high probability of Aspergers, the anxiety, self concept and anger scores along with her preoccupation with specific rituals and routines (which are all often associated with Aspergers), the current situation is that Duck has indeed got Aspergers syndrome.  Which I can see. I see all of the traits described in Duck and I see why she doesn't fit typical ASD and I see why the diagnosis has reached the conclusion which it has.

I find it interesting to read the report and work out how it all fits together. Child psychology is something which I have had a lot of interest in over the years, indeed, I am currently undertaking my Level 4 Diploma in it, which includes lots of detail about the WISC so it was interesting to see it in action.  That's another thing that has kept me busy. I studied Child Psychology some years ago. I decided that due to the lack of understanding of Duck and her behaviours within the big wide world, that I would pick up the lose ends at re-start the studying. Not that I actually have time, mind you. However, I have managed, reasonably quickly to get through the coursework, I am now just waiting to sit my final exam, which is online and in need of some very in depth work. I am hoping to complete it within the next couple of weeks.

One of the things I have covered in the course is the management of aggressive behaviour. Bare in mind the course is based on Neuro Typical (normal) children it goes in to great detail about how if you ignore or punish bad behaviour and reward good behaviour, the bad behaviour will 'extinguish' and the good behaviour will grow.  Yes, this does, indeed work on a NT child. I have worked with children for 7 years, and had my own for 11. It works, it really does. But, when you are dealing with a child who has 'concrete response' and 'limited social reasoning' coupled with 'preoccupation of specific rituals and routines' and 'high anxiety and anger', your normal behaviour management just doesn't work. Its not through lack of trying, its not through poor parenting, its through a child who is trying hard, really hard, but just isn't coping with the demands and stress of every day life.

We have also been on a couple of parenting courses, one was how to manage extreme behaviour and the second was de-escalation. Both of which offered a few ideas to add to our current bundle, but most of which we already do. We are still booked onto the Webster Stratton (the incredible years) when they run an evening one, however, I have already been told again, we do most things already and we may only pick up one or two techniques. Again, we will add these to our collection. We constantly need to change our reward system. Each one has a short life expectancy, then we move onto another.  We keep them all ready and move things around to offer variety and to spark interest. Currently, we are on 'A good morning or evening (behaviour wise) will earn you a scoop of bath salts in your jar, when the jar is full, you get £1 and you can use the salts for a nice relaxing bath'. This one has lasted well, just over 3 weeks so far which is amazing. Duck isn't behaviour perfect, however, she is keen to get the money as we stopped all other pocket money. She now has to earn it with good behaviour and if it takes a month to earn £1 then so be it.  To be fair to Duck, she has already earnt £2 in total and this evening she has been very motivated to be good and hit her third £1. Son has one too, we always run the same system for them so we are being fair to them both.

Sadly Ducks anxiety issues have now spread to school. She is separating really badly from me most mornings. There are some where she goes really nicely but the majority show just how much she is struggling. She has started being aggressive to her teachers, just for an initial time after I leave, for about 10 minutes. She is being kept away from the other children until she has calmed, but I hate the fact that she is struggling so much that she feels the only way to communicate this is by violent behaviour.  Again, referring to child psychology, a child will communicate however they can to be heard. Duck struggles to talk about her feelings, (refer to the low verbal comprehension score I mentioned before) so she is expressing herself the only way she can.  The School are working with us at the moment, we are trying several different approaches to improving the situation such as dropping her at different times, offering her different routes to go into school through and setting up some new behaviour management charts.  Behaviour support are still visiting weekly to support her too, she enjoys his visits and he is helping with friendship issues as well as self confidence and he chats to her about things that have gone well or not so well over the week, and how Duck could look at things differently. I am desperately hoping all this effort will work. Things cant go on as they are. Its not fair to Duck to be this anxious and its not fair to the teachers. I don't think they get paid enough. :-/

Duck has loved the warmer weather we have had recently. She has spent a lot more time outdoors, in the garden playing or on her bike. She has even taken the dogs for a walk (with son) on one or two occasions. Its lovely to see them both enjoying the fresh air and playing together instead of having cabin fever and driving each other mad.  Duck has been eating well too. She finally began to eat solid foods again and, although her diet is somewhat restricted, its nice that I can cook and she will eat. She has progressed onto food like chicken pie/slices, pizza, tuna or chocolate spread sandwiches, chicken nuggets and such like. We are so impressed, that we have promised her a trip to Mac Donalds tomorrow lunch time for her to choose a meal. We have always said we will take her there as soon as she feels up for it. This time round of food refusal has gone on for a long time, she deserves the treat. Her weight has done well though, she has managed to put on a few pounds, so despite her reluctance to eat for 10 weeks, we have done really well. I am seeing a child nutritionist in a couple of weeks, at the rate Duck is going, by the time we actually get our appointment, Duck will be eating full roast dinners and the nutritionist will wonder why we were referred. That's just typical. Still, on the plus side, I can discuss with her what Duck was eating when she was refusing solids so I can be better prepared for managing it if it happens again.

That's the update. As I said, lots going on and the fight for meeting Ducks needs will continue. The whole process in getting Duck the support she needs is long and slow. But we will win. It will take time. We just have to be patient. We wont give up. Duck cant fight this alone. In order for Duck to achieve the best she can out of life, she needs the right support. And she needs it now. So on with the fight.

Happy weekend everyone. :-)

Saturday, 15 February 2014


Today is the 15th February.  Those of us in a battle with PDA itself, or the diagnosis of it are fighting a war to get the condition recognised as it should be. We are also fighting a war to get the professionals who work with our children or diagnose or support us in any way to recognise this as a specific condition.

In the UK, some NHS trusts recognise, diagnose and treat PDA. Some deny its existence in any shape or form. Others, like Berkshire NHS, where I am agree it exists, however, they also believe that because it has similar traits to Obsessive Deviance Disorder, they will label as ODD. They say that according to the NICE guidelines PDA children display the same oppositional behaviour as ODD and that the treatment for PDA is the same as ODD (Webster Stratton programme) and therefore is PDA is suspected, a diagnosis of ODD is given as this condition exists in the medical reference guides used by all persons. I really hope you understood that because I am totally confused. In one part of the letter which I have, it clearly acknowledges that PDA exists. Then it describes the situation as above.

So, does PDA exist or not? Are our children, who show sometimes extreme autistic traits, suffer severe anxiety, have various sensory issues, struggle socially, show poor understanding of certain forms of communication and are really finding it hard to fit in really ODD?

If so, why does the National Autistic Society recognise PDA as different to ODD?
Why does the Elizabeth Newson centre specialise in PDA?
Why do so may private healthcare people show more understanding of PDA than ever and NHS specialist could?

As I said, the arm is fighting. We are fighting for fairness within the NHS, for fair diagnosis systems, for better understanding and for our right to find the best help possible for our children.

We are having a PDA awareness day today. We are sharing pictures and blogs across facebook and twitter. Some of us have emailed our MP's.

We are guiding people to two places. One is the PDA resource page and the other is to the On line petition to get things changed.

Please will you help?  We need people to share these and share on facebook THIS STATUS TOO.  This status has all the details on that you need. It also has the link to the PDA resource page which in turn has a link to the petition.

Join our fight. Lets get PDA on the map, where it rightfully belongs.