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.
http://www.bbc.co.uk/programmes/p02147l5

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

Question:

Is it possible for children to display different behaviours at home compared to school?

Answer:

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,

Luke

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.

 

 

 

 

 

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'

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. :-)

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???

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. :-)

PDA ARMY FIGHTING BACK!!

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.

Sensory issues with my little Duck.

I have been asked about SPD (Sensory Processing Disorder). This is something that I feel Duck shows signs of alongside PDA/autism.

SPD is a condition which affects some of a persons senses. Now if I am totally honest, I have very little information about it. I have not researched it other than what I have been advised to look up by Occupational Therapy.  What I do know is how it affects Duck.  I touched on sensitivity in her hearing in my last post so I thought I would spend a little time explaining things in a little more detail.

There are 7 senses, yes, contrary to popular belief, there are 7, not 5 as we all learnt at school.  The regular 5 are obviously hearing, sight, smell, taste, touch but then there is a further two that I had never heard about until I got the details from OT, these are...vestibular sense (movement and balance) and proprioceptive sense (body awareness). These are the two senses which are not known about very much.

Then, each one appears to have an 'oversensitive' (hypersensitive) and an 'under sensitive' (hyposensitive) so, basically everything is double. That makes 14 areas of study for me to look into.

I have already explained about how Duck reacts to noise. She is hypersensitive.

Sight sensitivity
Duck shows no issues with her sight sensitivity. She has slightly weak eyesight, but that's very mild and there are no concerns. She does not appear to react to light and she shows a very slight under responsive system in response to lack of attention to her environment.

Smell sensitivity
Duck shows no issues with most smells, although she does react to very strong smells, this is very occasional.

Taste sensitivity
Duck is hugely taste sensitive, she has always refused strong tasting foods and stuck to bland tasting things only.

Touch sensitivity
This is one of the worst areas with Duck. She is hyper sensitive to so much. Firstly clothing, she wears the same pair of trousers to school every day, they are too short, they are old and fading and they are not in the best shape ever. But she wont wear any others. She is sensitive to texture of foods, currently she only manages to swallow liquid foods, she is refusing all solids. She is more sensitive when she is stressed. So during term time she eats even less, during the holidays, I can often get her to eat some solids. She insists on baths being HOT, so appears under sensitive, but she is hypersensitive to pain. She only wears a certain type of underwear, and cant have anything with lace on it. She regularly rips her clothing off saying it itches her and insists on socks being rolled down to exactly the same height on each ankle.

Vestibular sense (movement and balance)
This in an interesting area. You see, Duck is almost 10 years old. She can ride a bike on two wheels, however, she is very wobbly and she wont go up or down a steep, or even slightly steep hill. Learning to ride a bike was interesting.  Duck never seemed to 'get it' with bike riding. She would panic and wobble. In all it took years before she got it.  We tried every trick in the book of helping her, but she used to jump off the bike, mid ride and scream that it was alive. Then she would pick it up and throw it into the nearest bush. We have lost count how many times we had to dig the bike out of the bushes and encourage her to try again. We never really considered it as a huge issue. We certainly never related it to SPD type conditions. But then we did not know there were seven senses. It all seemed to make sense the day I took the triage appointment from OT and she asked about Duck riding a bike.  Duck always used to hate lifts ( I thought it was the enclosed space, but maybe I was wrong) although now days, she prefers lifts to escalators. Both of these fit in the movement category.

Proprioceptive sense  (Body awareness)
Poor fine motor skills springs to mind for this one. Duck can control a pen well when she wants to so again, school see no issue here. Yet I would imagine they have never given her aqua beads and asked her to follow a pattern with them. I guess they have never been on the receiving end of a whole box being launched across the room because Ducks fingers cant quite get it. I guess they have not noticed how catching a ball is somewhat hit and miss, probably more often luck or miss from what I see at home. This is yet another area whereby I see things the schools don't. But then I am 1-1 with Duck where as in a class they are 30-1 most of the time. A teacher will never see what I see and will never be able to give as much detail as I can.

Duck has to wait for about 4 more months for an appointment to see an Occupational Therapist. The lead time was 18 weeks, but we have moved on a little. They are trying a new system. They offer a telephone triage appointment within a very short time of the original referral, then they guide you to their new web site which has everything on it that you need to know to start and improve the sensory issues. The plan is that by the time you see a real person, you will have been improving things little by little and that will make a positive place to start your treatment from.  I was directed to SPD site and printed off all the relevant pages. Then I sat and went through it all, highlighting Ducks difficulties and also highlighting what we currently do to help, leaving other ideas to try out. After reading through it a couple of times, I realised there was no advice for eating issues, taste. Then I realised there was no advice for smell either. I revisited the website and searched. Nothing. In our triage appointment, I was concerned about the taste issue. The OT told me that children with SPD have issues with the texture of food in their mouths, and this is treatable. I had to explain that Duck doesn't mind food in her mouth, she just has sensory issues with it in her throat, she doesn't like lumps in her throat. The OT told me she did not know how to help that. I had secretly hoped to find something on the website that would help. But there was nothing what so ever about taste/food texture on the site at all. It took 2 days for the OT to return my call. She sheepishly admitted the details were missing from the site and that she would refer it to be changed. In the mean time, she could be no further help.  So we got half a job again.  We have not progressed much at all.  Duck still refuses solids and we have no idea how to help her. 

Not that I am getting frustrated, but everything we do seems to be half a job at the moment. Half the autism test. Half the information from OT, half and understanding from school.  Half an effort from CAMHS. The only person giving 100% here is me.

The worst 4 weeks of the year. And its only February.

My summary of the last 4 weeks can be described in just one word...HELL!

We have been under investigation by social services because 'Someone' reported us anonymously for child abuse. Not minor, but real serious stuff.  Like how Duck has had 2 urine infections in her 9.5 years and therefore must be sexually abused. Like how giving her the sedative in the correct dose my GP prescribed is neglectful and abusive, and how my blogging about our lives is emotional abuse.

I discussed the allegations with my GP. I do love my GP, her immediate response was 'Well, of course you are being blamed. Its often one of the most common issues with this type of autism. Blame the parents first'  She went on to point out that we have fought hard for Duck, attended EVERY appointment and never given up. She reminded me that any abusive family would not be pushing so hard, but trying to hide away from help and support.  I needed to hear that!  Needless to say the social worker investigated thoroughly and found no cause for concern about abuse and has closed the case.

She has however, suggested that Ducks behaviour may be because we have told her too much about what we think it wrong with her, and that could be cause for concern and its something we have to watch.  Husband and I disagree.  We have told her very little, we have explained we feel she has a form of autism and that is why she has meltdowns and finds some things hard we have shown her a few details about autism and as I work with an autistic child, autism is not a taboo subject in our house.  Her brother knows a little more, but he is older.  What has not helped is that when Duck visited a friend in October for the first time after school, I explained to the mum about our concerns, on the basis that I felt she needed to know in case she had any issues whilst Duck was there.  Her daughter was then overheard in school telling Duck she had mental health issues.  That comment has come back on us as parents as part of the concern of 'giving her too much information'.  In all honesty, I would do it again! I would not let Duck go to some ones house without speaking to the parent, no matter what the risk involved.  I had never met the parents and did not want a minor issue causing a meltdown because of poor understanding.

Now the concern is that Duck is being difficult because she has an excuse to be difficult. We disagree.  Duck is being difficult because she isn't coping.  She is not coping socially (she needs to take a teddy everywhere with her, even if he stays in her bag, he still goes to school) She is not coping emotionally (constant meltdowns, chest pains GP has verified as nothing, tummy aches) and she is not coping academically (issues over home learning she says  the work is too hard, but doesn't want to move down a group in case friends laugh at her).   Its not poor parenting. Its poor understanding.

Duck has lots of sensory issues, which we have finally been referred to Occupational Therapy for. One issue is her noise sensitivity.  School and home have totally opposite views to this.  School have never had cause for concern about noise sensitivity, however, at home, she has jumped from three quarters of the stairs down into my arms (to this day, I do not know how I caught her) in total panic because of the fire alarm going off.  She does not cope going out to pubs or events where its noisy, she often complains of little noises annoying her, like the fridge buzzing.  We brought her some ear defenders at Christmas as she tried them at a kids group and was amazed at how beneficial they were.  She uses them a lot and since getting them has enjoyed social events much more with the ability to block out any unwanted noise. 

So why do school not see any issues? Why does Duck behave totally differently at school with things like this, it doesn't make sense. Until you look into the Jeckyl and Hyde of autism.

School went to a play the other day, Duck asked to take her ear defenders, so I let her.  Normally I dread these kinds of show, because Duck comes home in a vile mood, with a headache and generally complaining of not feeling well and being very distressed.  I assume its the noise, although I cannot prove this. This time, however, with using her ear defenders, Duck came home in a brilliant mood. No headache, no complaining.  She thoroughly enjoyed the show and kept talking about it with more enthusiasm than I have ever known.  A coincidence?  I don't believe so.

The concern regarding Duck knowing too much about what 'may' be wrong with her links into this very strongly.  School implied they felt she did not need the ear defenders as she has never shown any noise sensitivity in school.  This could be an implication of FII, Fabricating Induced Illness.  In other words, it could be seen that we am making up some of the issues for our benefit, for money or attention.  Along with the implication from others that we have led Duck on to behave this way, we could be in line for more difficulties.  FII is common especially within the world of autism, where children can have Jeckyl and Hyde characters and the school only see Dr Jeckyl but home see Mr Hyde.  There was an article in the Mail about it not long ago.  To read it, click HERE.  These people had a diagnosis for their children and they still got falsely accused.  We don't even have a diagnosis as yet.

I also disagree that the school have never seen noise sensitivity issues in Duck.  Every year Duck has complained to me about the amount of shouting the teachers do.  This year, she has been seeing behaviour support, she has confided in him, several times, that her teacher shouts too much, school are aware of this and deny that's the case.  I support the school here.  Duck has had 5 different teachers in her 6 years at primary.  ALL of them apparently shout too much and ALL of them have shouted directly at Duck.  Apparently.  So I would say its one of two issues, either Duck has had a really bad run of teaching staff and managed to get the worst teachers in every year, or its not quite as Duck describes.  Could it possibly be that Duck feels like everyone is shouting?  Could it be that she possibly has noise sensitivity where by everything seems louder than it really is?  I believe this is a sign that she is not coping with the levels of noise.

I have also raised a concern with the school previously regarding Duck feeling a need to put her hands over her ears in a situation where she was not coping.  This has happened at least a couple of times that I know of in recent months.  Why would Duck feel the need to do that?  It could be plain rudeness and it could be defiance.  Or, it could be a sign that she isn't coping well.  Or maybe, just maybe, she is anxious and more sensitive to noise.  Meaning that the conversation she is listening too is too loud.  She has told me she puts her hands over her ears when its too loud and if she feels like someone is shouting at her. Noise sensitivity is an issue here.

At home, if we tell Duck off, even in a calm manor with no raised voice, she will often yell back at us 'Stop shouting at me'.  We are not shouting. It just feels that way to her.

Duck doesn't react to the school bell any longer, it goes off several times a day so she has got used to it. In lower school, she used to complain to me continuously, but the longer she has been in school, the easier she has found it.  The school bell is also the fire alarm, so she has got used to that too.  In lower school, she would grab a friend and they would go out together if the alarm went, but as she has grown up, she has learnt to deal with it better.  She still complains about it.  She doesn't like it. But she has learnt that its a regular alarm and it does not affect her in the same way our alarm at home does.

I asked Duck what she does when the classroom is too loud and she doesn't like it.  Her reply was that she isn't allowed to put her hands over her ears as she has been told off for it, so she pretends her ears are blocked and makes a buzzing noise in them to drown out the sound.  School have previously commented that she sometimes appears to be disinterested and not paying attention.  I wonder if this is linked?  I am hoping Occupational Therapy offer a hearing test.  Maybe then we can find out just how sensitive she is.

I think that Duck displays subtle traits in school, and because they are just too subtle, they don't see it. Not through lack of trying, through one teacher to 30 children and the total inability to see everything that goes on.  Most of Ducks traits are subtle, especially in school.  They have seen issues though, its not all sweetness and light.  Duck has had minor meltdowns, sat down and refused to move, got unhappy because a teacher did not meet her where she said she would one morning, accidently hit a teacher whilst lashing out at me, snapped a pencil, refused to read and several other defiant and uncooperative issues.  All minor so far.  But all there and all real. And getting worse.  I feel that she is now finding it more and more difficult to contain her anxieties and they are starting to spill out at school.

We have a private assessment for Duck next week.  We are determined to get to the bottom of this with our without help of the NHS.  We need to know whats causing the problems so we can start to fix them.  I don't know if out Local Education Authority (LEA) will even accept a private diagnosis. But it will mean that we know, and we can be headed in the right direction.  Duck has to come first in all this. She has been left by the NHS at the bottom of the pile for way too long.

We received a letter from the NHS trust which was sent to our MP after he investigated my concerns about the service offered.  This letter clearly says that when Duck was assessed at three and a half, she was borderline autistic. Nobody ever told me that. I was told she was shy and needed school. It goes on to explain as girls develop more complex, it is likely she now meets the threshold for autism. So if the services knew at three and a half that she might be autistic, why were we refused and ADOS when Duck was 7? Why were we refused and ADOS in last December when we were seen again? Why has it taken my MP to get involved and start harassing people for out daughter to get an assessment which she is entitled to? Why. Just WHY????

The NHS is letting families down. I guess that's nothing new.  The social worker said to me she was concerned that I had lost faith in the services that are here to help. Well, yes. I have lost faith in them. There are a few people who are trying to help but the rest of them to be fair, are a total waste of space. I have had my trust in the support services shattered in several ways and by several different people. I wont be in a rush to trust them again.

And on with the fight.......

Autism assessment brings more frustration.

Wow. Frustrating is an understatement.

We had our ADOS (Autism diagnosis assessment) this morning. Actually, that's not 100% true. We had half of our ADOS. In order to gain a diagnosis, there has to be 2 people present to asses the child, one speech and language specialist and one psychologist or paediatrician. We were booked to see a Speech and language and a psychologist. However, the speech and language lady was blocked in by flooding and did not make our appointment. So the normal procedure was changed and this is what happened.

Firstly, Duck was seen by the psychologist, she spent 45 minutes going through the ADOS play assessment with Duck and then we left Duck playing on her tablet in the waiting room whilst my friend and I went to go through everything else with the psychologist.

We were told Duck co-operated well, but made no eye contact what so ever. She also made no hand gestures in what she was doing, nor did she give more than one word replies to everything she was asked, although she did remain polite throughout.

We went through her history, her previous assessments and I was asked questions that I had never been asked before. Questions that made me really think about Duck. I was asked so many questions that I cant list them. But one that stuck with me was this; 'Does Duck use hand gestures when describing things to you?' I had to think hard on that one. In all honesty, I can not recall one time where by she has used hand gestures when describing something. I think as far back as I can, I barely remember her pointing to things, she has never used gestures to describe a plane flying, nor when she is 'telling off' other children. In fact, I have never seen her use her hands as a form of speech in any way, shape or form. What's even worse, is I had never even considered it either.

The psychologist spent an hour and a half, interrogating myself and my friend over Duck. We were able to show clips of tantrums, photos of autistic traits and given plenty of opportunity to describe Ducks behaviours. It really helped having someone from outside the family there. She was able to give an unbiased view. What is more important is that both my friend and I felt listened to. The psychologist really understood the Jeckyl and Hyde of autism. She understood how Duck can mask things at school but explode at home. She explained its normal for autistic children to be violent to only 1 person most of the time. She explained its almost always mum. She understood my need to put extra locks on the doors and windows, she understood our need to find out what is really going on with Duck. She understood. All of it, she really understood.

I was not laughed at for raising Pathological Demand Avoidance (PDA). We agreed Duck fitted a lot of aspergers traits, but she did acknowledge she may also fit PDA. She admitted she did not know enough about PDA but she was aware it existed and she was aware that its real. She also said at the end of the day, an austim diagnosis is important, more so than where a child fits in the spectrum. Once diagnosed, the childs needs are met wherever they are. It doesn't matter what end of the scale or what needs the child has. They should be met without a specific label.

The end result of today was that the ADOS score sheet needed working out to see how she scored. This is key. If she doesn't score enough, she will not be diagnosed. Its frustrating to rely on such an old system.  We also now have to wait for someone to visit Duck in school to observe her in her social groups. This wont be for about 2 weeks. (This feels like a really long time right now.)

The only good news from the meeting is that the lady who was there has agreed our description of Duck is typically ASD based. I got the feeling if it was down to her alone, we would have walked out with a diagnosis. But its not. Its up to a piece of paper and a second opinion. Once that is complete, they will sit and discuss everything and make a decision.

It could have been over today. We could have had a final verdict. But it wasn't meant to be. We are still waiting. Again.

ADOS day

So we had a weekend which was somewhat 'normal' in the context of anxieties, jealousy and general behavioural issues. I was attacked by a pillow several times and the constant repetitive moaning just confirmed why we refer to her as Duck. We sailed through sons party which went well, but as soon as the party was over, the complaining started. Duck wanted presents, it wasn't fair. Duck wanted a new bed, just like sons. That wasn't fair. Duck wanted to go and do the wall climbing experience with him. That wasn't fair either. Duck forgot that she is terrified of climbing walls, high ropes and everything else. She just wanted what brother had, and more.

Then later that evening Duck hit total meltdown.  She was trying to do a puzzle whilst sitting on the sofa next to her dad. Dad shouted at the tv because hr was watching sport (his team were losing as usual!). Duck kept shouting at him to 'Shut up'. She was so rude and agressive but we both ignored her. After a few episodes of yelling at him to shut up, duck started punching him. This made a rare change.  It was interesting to see how she was agressive towards him. She punched him several times, well over a dozen.  This was then followed by a huge meltdown,  packing bags, trying to leave home and trashing her previously tidy bedroom. She even left a note saying she was off to find a new home where she was wanted.  It took over an hour of tantrums before I managed to calm Duck down enough to get her relaxing in the bath. I can only hope she behaves like this on Monday morning.

Monday is looming and Duck has her ADOS (The very old autism assessment diagnosis) in the morning. Duck doesn't want to go, and I am extremely concerned as Duck can mask almost all her autistic traits for upto 7 hours a day whilst at school. I don't really see how she can be identified as autistic within a 2 hour session. Duck makes good eye contact, Duck communicates well and Duck has good social skills. On the surface.

I have evidence of so many autistic traits its unbelievable. I have photos of her lining cars up, matching colours on Kerrplunk, sitting in baby seats. I have video recordings of her attacking me because I wont go to town to buy sweets, I have voice recordings and witness statements to point out her autism traits. I have her brown owl confirming she tends to stay 'outside' the group a lot, school confirming they have seen issues in change of routine and a friend coming with me to back up everything I say. She commented today that Duck is getting worse. Its no surprise to hear that someone else sees this. She is struggling socially, she is struggling academically and her anxiety levels are through the roof. She is worse. Much worse. I dread friends coming over and hate going to visit places. Duck just doesn't cope and it always ends in disaster and often us leaving early.

Its commonly accepted now days that a lot of autistic children can mask their symptoms whilst at school and explode at home. Its also commonly accepted that a lot of autistic children especially girls don't score enough points on the ADOS to be diagnosed correctly. Its also recorded in the NICE guidelines (National Institute for Health and Care Excellence) that an autism diagnosis should not rest on the ADOS test alone. This means they should listen to me. They should hear my point. They should accept my pictures as evidence. They should accept the statements from others. They should. Shouldn't they??

These are the NICE guidelines for an autism diagnosis procedure..


Children and young people
The following should be included in every autism diagnostic assessment for children and young people:

• Detailed questions about parents or carers' concerns and, if appropriate, the child or young person's concerns.
• Details of the child or young person's experiences of home life, education and social care.
• A developmental history, focusing on developmental and behavioural features consistent with the International Statistical Classification of Diseases and Related Health Problems (ICD-10) and the Diagnostic and Statistical Manual of Mental Disorders Fifth Edition (DSM-5) criteria (consider using an autism-specific tool to gather this information).
• Assessment (by interacting with and observing the child or young person) of social and communication skills and repetitive and stereotyped behaviours, including sensory sensitivities, focusing on features consistent with the ICD-10 or DSM-5 criteria (consider using an autism-specific tool to gather this information).
• A medical history, including prenatal, perinatal and family history, and past and current health conditions.
• A physical examination.
• Consideration of the differential diagnoses (see NICE clinical guideline 128, recommendation 1.5.7).
• Systematic assessment for conditions that may coexist with autism (see NICE clinical guideline 128, recommendation 1.5.15).
• Developing a profile of the child or young person's strengths, skills, impairments and needs, including: intellectual ability and learning style, academic skills, speech, language and communication, fine and gross motor skills, adaptive behaviour (including self-help skills), mental and emotional health (including self-esteem), physical health and nutrition, sensory sensitivities, and behaviour likely to affect day-to-day functioning and social participation. This profile can be used to create a personalised plan, taking into account family and educational context. The assessment findings should be communicated to the parent or carer and, if appropriate, the child or young person.

 

There is a lot of information to absorb for just a 2 hour assessment. The evidence I have is overwhelming, however, the way Duck behaves on the day will have a huge impact on the outcome. Duck is so compliant at school and in other places, especially when I am not there.

 

Don't misunderstand me, I don't actually WANT Duck to be diagnosed as autistic for me. I NEED Duck to be diagnosed for herself. She needs support. She needs more understanding of how everyday life affects her. The current expectation is that Duck is a Neuro Typical child, and behaves in a similar way to any other child. This is because she has masked everything so well. But Duck is not Neuro Typical. She doesn't behave the same as her peers. She finds keeping up with them hard. Really hard and this is why our friends can see her getting worse.

 

 

Ducks dislike to unexpected change of plans.

I have to say the school reward chart has done better than I expected. In all, Duck got 10 minutes golden time today, so she went in well twice. She hadn't hit or kicked me and she had not needed retrieving from wardrobes or underneath beds to get her to school at all. Until today!

Duck got ready well, despite her being awfully upset as it is her brothers birthday (Happy Birthday to our 11 year old, this makes me feel old). Duck was very excited for brother, then had a meltdown as she got no presents. We have this every year. Nothing has changed there. She always is so excited, then has a meltdown when she gets nothing. We have never brought either of them a present for their siblings birthdays, and never will. I am sure we will have the same tantrums for the next 9 years too.
However, Duck did actually say sorry to him for ruining his day (proud moment) then she got ready for school. She was allowed to take some craft stuff in for her golden time. She appeared with a box full of bits which I said she could take as long as she did not expect me to help carry as I knew the school would not help, so she had to be able to manage.

We got to school, expecting SENCO to meet us as normal. Duck walked proudly into the office with rucksack on back and box in hands. Senco wasn't there. :-( Duck did not cope with the news that they were going to find her and in the mean time another teacher would take her through. Duck loves this other teacher. But it was a change to the plan. School have never seen Duck have any issues with change. Today they did! Duck was rude, and I mean really rude in the way she spoke to this other teacher. Saying she cant go because senco was meeting her there. She told me she couldn't leave without senco because that was what was arranged. We coaxed, using the golden time, explaining she would go look for senco right away and everything we could think of. Duck froze, as if in a panic. After a few minutes, I marched her through the door with the teacher and closed the door, leaving quickly. I got a thanks of a footprint in my shin. No hitting though. She would not put her box of bits down to hit, so I got a swift back kick instead.

Now whilst I am horrified at the way Duck can behave, I came home happy about this. Strangely enough, school noted on Ducks autism assessment form that they have never seen any issues with change to routine. I could only see a positive that I had more to explain on Monday at our autism assessment about how she reacted to change. Then I realised, I am only her mum, and I would exaggerate, obviously, wouldn't I? So I called the school. I spoke to the teacher. I asked if she picked up on the issue being unexpected change, she said yes. I asked if she felt Duck was rude in the way she spoke to her, she said yes. I asked if she saw her kick me, she said yes. Then I asked if she would write a statement down for me by the end of today so I can use it as evidence that the school have seen issues around Duck and change of routine and she said YES!!!

I can go to our appointment with more evidence saying Duck has autistic issues and the school are witnessing more and more, even since they filled their form out just 2 weeks ago. I can go and say the change of routine is subtle, but most definitely there. AND ITS NOT JUST ME WHO SEES IT!

Then I got called into school regarding something totally different, less than an hour after requesting the statement. Whilst I was there, a letter was handed to me. It explained how Duck was distressed because she was meant to meet senco and she was 'rooted to the spot'.  It also explained how she kicked me and the rude tone Duck used.  It went on to say after I left, Duck still refused to co-operate and any attempt of engaging her was met with 'I don't care', 'No', or 'I will stay here' until senco arrived. It wasn't because of her love for senco (although Duck does like her). It was because Duck cannot cope with change. The plan was to meet senco. Duck couldn't grasp that senco was not there. Simple.

Reward charts just do not work on Pathological Demand Avoidance

I have said enough times that school are trying,  I mean really trying.  They have tried all sorts from sticker chart on deputy heads door (Duck just refused to put a sticker up most days)  to some morning play therapy type thing with senco and all sorts of promises of guinea pig clubs, jobs and basic bribery.  The lastet attempt, to me appears somewhat futile and whilst I am really pushing it with Duck I just fail to get too excited.  They are trying a new tick chart. Teacher has put a lot of effort to make it right for Duck. Its a 1 Direction chart,  printed in PINK. Duck loves it (to look at). The rule is, every day she goes in well, she gains a tick. Each tick gives her 5 minutes free choice, golden time with one friend on a Friday afternoon.  Sounds brilliant.  I have used reward charts of various forms to their death. As yet, I have never found anything that works for more than a couple of days.

Extract from The Times 20 December 2011 - For most children the demand avoidance phase will pass, or can be greatly improved through strategies such as rewards and sanctions (sticker charts, time out or a naughty step), reasoning, praise for good behaviour, peer pressure and routine. But these techniques do not work for children with PDA. To read this in full, click HERE

Extract from another PDA blog - Rewards, consequences, sticker charts and so on have not been successful. To read this in full, click HERE

 

You can search for hours, but you will find out that reward charts DO NOT WORK on a PDA child.

 

I have been told many times they do work and its my parenting that's the problem. Which is fine. That means that the school one will work, wont it? Because, lets face it, I have been getting it wrong for years and the school are going to do it differently, so their way will work their way must be right. Its simple. Honest.

 

So, yesterday, teacher called me and explained the new chart. She asked me to 'get behind it' to motivate Duck. Which I did. I ran through it last night with her, and pointed out how much fun she could have on a Friday with a friend, and how exciting it was that school are doing all this to help her. She was excited and very happy discussing it.

 

So she got up this morning. She was very sulky about going to school, although not as bad as she can be. I reminded her of the school chart and asked which friend she was going to invite (staying positive here) she said she did not know. We got to school, into the office and suddenly, Duck froze. I reminded of  'Golden Time' and her reward chart. The receptionist even joined in and said she had heard about that. However, Duck shrugged her shoulders and said 'I don't care'. I had to push her into the office and through the security door, peel her hands off the handle she was clinging onto and fight to close the door. Amongst wails of 'No mummy, No!' Ok so she has had worse days, and today is just day one. I guess it could get better. The reward chart could work. Couldn't it??

PS....please accept my apologies if anybody thinks I am being cynical or negative. I would love nothing more than to be proved wrong and a perfectly planned sticker chart to be the solution to all of Ducks behaviours. But I have to face the truth. Duck is not 'normal' in the context that most people use. She probably never will be. We, as parents have accepted that, and love her as she is. Its a shame other people cant see past the reward charts.

PDA is a type of autism which is consistently under recognised within the NHS. It is a post code lottery which is recognised just 7 miles from us, yet not here. We believe our daughter suffers from this kind of autism, but we have been unable to get a diagnosis as yet. PDA children do not display all the classic signs of autism so often go un diagnosed or misdiagnosed. There is a petition at the top of my page to help resolve this postcode lottery.  Please help us to change this situation. There are hundreds of children, teenagers and adults with this condition but they don't get any support because of the poor services of the NHS.

Long time no Duck

I have not written for almost two weeks. It's not because I have lost the motivation to write and its not because Ducks problems have suddenly disappeared but its because I have been to angry to write anything that could be in any way constructive. As it is I am still too angry but the whole point of the blog is to focus on Duck, the possibility of PDA type autism and the fight I have to get the right support for her. Its not just about Duck, its about all the children who are suffering at the lack of support from our mental health services. Time and time again I am hearing about people who have been on waiting lists for almost a year for basic services like occupational therapy. We are now on the list and I have been told its a maximum 18 week wait. We shall see. We also have an ADOS coming up. That's the basic autism assessment. Sadly its known to repeatedly fail to pick up on the subtle autistic traits of a PDA child. I am not holding my breath over the results. Indeed, I have Duck booked in for some other, more suitable tests through a private clinic. I am not prepared to sit back and watch Duck suffer any longer at the hands of services who don't listen. 

Duck hasn't been going to school well at all over the last couple of weeks. She hasn't been going to bed well either. Life with Duck has been a constant battle. I have regularly had to dress her like a baby, put her coat on her and carry her to the car, a sobbing mess. I have lost count of the physical attacks, punches, kicks and headbutting. I cannot remember how many times she has screamed that she isn't going to school, that she hates me for making her go and how I am the worst mummy in the world for strapping her safely in the car to drive her there.

I spoke to occupational therapy today, they offer a triage phone service for all new referrals. I was asked lots of questions about Ducks sensory issues. I was told Duck probably has Sensory Processing difficulties and they would send me some paperwork and some links which will have information on dealing with SPD in the post. I was not surprised they suggest SPD. Duck has had major sensory issues from a tiny baby and I have raised it many times, its just that until the situation gets drastic nobody listens to you. Sensory issues were raised from Ducks 3 year old assessment and again at 7 and again now. We are only being heard this time because Duck is also showing her violent behavior towards me at school and with other complications, everyone is suddenly worried about Duck.
The sad thing is she explained that children with SPD and eating issues usually struggle with the texture of food in their mouthes which is what OT are trained to deal with. Duck has no issues with food in her mouth, she has issues with food in her throat. Its totally different. Still SPD but mouth texture sensitivity is treatable, throat sensitivity, apparently, may not be. We will have to wait and see but that part of the conversation didn't sound positive. Being realistic, we could be looking at a long time on liquid foods.

School are still trying to help reduce Ducks anxiety. I don't know if they have been reading up on PDA handling techniques or if they are just freely experimenting but they have changed drop offs so senco meets us and takes Duck off to her office where they at various games, space hopper races and lots of other fun stuff for 20 minutes, then at the end of the day senco goes back to see her at the end of the day to try and de-stress her before she comes home. It's helping a little bit too. Duck has not been as aggressive, although she remains totally demanding.

Neither senco or I are foolish enough to believe it will work for long, but I am enjoying the simplicity of Duck getting herself ready for school whilst it does last. Duck already says she isn't going to school on Monday, despite being asked to take a card game in to play. We will wait and see what happens!

We have autistic support coming at some point to assess Ducks separation issues. I hope all the work done by senco doesn't stop Duck having a bad morning when she is being observed. The last time she was observed she went in like an angel with no support. I don't know why. Nobody told her and she can't have seen the lady observing but its like she KNEW! I can't help but wonder if a camcorder set up for a few days would be helpful, but I don't know if school can do that or if we could hide a camera enough for Duck to not notice.

Right now its Friday evening and my lounge is TRASHED! Duck and son have built a den to sleep in. They love being kids! They are planning on spending the night 'camping' on the lounge floor, watching DVDs and relaxing with the dogs. As for me, I will be snugly tucked up in my nice soft bed. I am most definitely to old to sleep on a floor these days! Duck And I  have been playing cards tonight, as usual I lost its odd that I always lose.

Tomorrow we may be baking, I keep hoping that encouraging Duck to cook and effectively 'play' with food she may be tempted to try something. Its not happened yet, but I will keep trying. Also tomorrow we have a church celebration to go to. There is a puppet show, puppet making, a meal and some evening entertainment including husbands band. Duck has said she doesn't want to go. Well, that's not quite true, she said she isn't going. Quite clearly and very assertively. Then Sunday, the church celebrations continue in the morning. Again, Duck is refusing to go. The problem we have is that although Duck tries to be in charge, she isn't really. We are. And we ARE going Saturday, and we will be going Sunday too. I now have a special 'meltdown' room allocated to Duck and I in church. So if at any point it all gets too much we can go and shut ourselves away from the gawping eyes and meltdown all by ourselves. Organization is the key... Planning the meltdown and making sure Duck is safe whilst she has a sensory overload.

Happy weekend everyone.

What a week.

Ok so I have lost the heart to blog recently. Life has been too complicated.
Firstly, I have been told there are some in accurate details in my post regarding the triad of impairments, which I will look into although I am going to give the technical explanations a wide birth for a while! and secondly I have had so much going on with the allegations of child abuse that were raised to me on Friday evening.
I am a registered child minder and I totally support any child abuse investigation, including that of my own daughter. But what really upsets me is that whilst social services are investigating allegations like my own, which have been made up as a revenge attack from some so called 'professional' who isn't even prepared to give her name, a 3 year old boy dies at the hands of his mother. I do wonder how my accuser would be feeling if that boy had died in our town as a direct result of her wasting social services time and recourses.

I hate waiting. Really hate waiting and I have to wait.

Meanwhile, Duck had a terrible meltdown on Sunday over a cup of tea. Cutting a long story short, she had been shouting at me about this cup of tea for 20 minutes. It was in a lidded cup, but when we got to church she almost threw it at me, saying she didn't want it. I was not prepared to get into a shoving hot tea back and forth, so I whipped the lid off and tipped in the nearest bush as fast as I could. Duck was not happy. In fact, she flipped. Totally. We ended up in the entrance porch to our church with her having a huge violent hour, hitting, kicking and screaming and shouting for over and hour. Needless to say I was not flavour of the month. Any of our church who missed her previous meltdown a few weeks ago, certainly caught this one. We had to shut all the doors between the porch and the church to drown out the noise. We almost always have meltdowns on a Sunday. Its not because Duck doesn't like church, or Sundays. Its because the day after Sunday is Monday. Duck doesn't like Mondays. Duck despises Mondays. She relaxes a little on a Saturday, but by Sunday, she is anxious that school is looming. Poor kid. She is anxious all week, and then when she has a weekend off, she spends half of that anxious about Monday. I get anxious occasionally, everybody does. But I cannot imagine how hard life must be when you get this kind of anxious almost every day.
Monday drop off wasn't too bad. I was grateful because I was distracted and needed to make those calls. But by Tuesday morning, Duck had decided she didn't want to go to school. And she meant it. I had another one of those mornings where I had to play hide and seek at school run times. I found her under her bed crying. I coaxed her out and down the stairs, into her coat, into her shoes and into the car where I strapped her safely in. The other end she was awful. She (as normal) locked her car door so I couldn't open it. I used the key to open the windows so I could reach in. As I did so, a teacher appeared to help, but sadly this just sent Duck into a panic. She shot across the car and out of the drivers door window and started to run away. I made light to her about how she managed to escape and questioned if she could get back in the car the same way, which was just enough to make her stop and turn around. She ran back to me and clung onto my arm screaming not to leave her. Teacher came to chat, and we coaxed/marched her to the entrance of the school. Another teacher appeared and I whipped my arm away and shot out to the car. I saw a third teacher running towards her and all 3 of them trying to calm her and stop her escaping from the school. As I drove away, all I could hear was screams of 'I want my mummy'. :-(. Duck was going in quite well for the SENCO until recently. She likes the SENCO, and is usually cooperative for her. But I have noticed recently, she has had more bad days. Knowing what I do about PDA, I think its safe to jump to the conclusion that she needs a different plan. Something new, to catch her off guard. As for what that may be, I have no idea. That's something I will be discussing with the school when I go to the meeting. Its a big meeting this time. We have 3 different behaviour support workers there.  Then we have the head, SENCO, teacher, Social Services and myself. I cant wait. :-)
Wednesday drop off was as awful as ever. Duck had a terrible time in the morning getting ready. She was crying as I led her to the door and put her coat and shoes on. We got to school but she was still really upset and complaining she didn't want to go. When we got there she wasn't too bad, but did cling on to me screaming and trying to chase me out of the office. I could see and hear teachers struggling with her. I have no idea how long it took to get her through. I have to drive off as quickly as I can to stop her attempting to follow me. 
Meanwhile I went to my GP for a prescription.  She had a chat with me about the allegations and she has also previously looked into PDA for me. She told me that we have done everything we can for Duck, we have attended all meetings, referrals and appointments for her. We have argued with children's mental health services, we have called in an autistic support worker, we have called in a behaviour analyst privately to support us. We have also followed all advice given to us, we have involved our MP to get the referrals Duck needs. We have kept our GP up to date with all of Ducks progress and she is backing us 100% on all the allegations. I commented how Duck could be so 'normal' one minute and then so aggressive the next. She pointed out that this and all Ducks anxiety and behaviours linked really well to PDA. She also pointed out that poor parenting is often the first problem raised as PDA is not understood. I knew all of that. But it was good to hear it from a GP. She really had looked into it for me and I needed to know it.
Thursdays meeting was hard, nobody seems to know what to do to help Duck with her separation, her eating or her toileting issues. It seems I managed to clear up a few points but basically, we have to sit and wait for the referrals that CAMHS have made. Ducks ADOS is in a couple of weeks, for what that is worth. So hopefully things will move soon.
Behaviour support wanted to observe Ducks separation so she was in school Friday morning to see how it went. I didn't tell Duck she was being watched, and there was no way would she have noticed. But from half an hour before we left the house, Duck was really happy and keen to go to school. Typically, she went in the best she had done all term and needed no support of any kind from teachers. She even gave me a grin as she walked in and said 'Bye bye mummy'. Then Senco and I are left banging our heads against a wall....Still, there is always Monday.
Duck was lovely all evening Friday, although it did take me a while to settle her into bed. Saturday she was happy and eating (well drinking) lots, she said she was hungry. I still cant get her to try any real food. It doesn't seem to matter what rewards I offer, or how hard I try, she just panics that she will choke. I am hoping Occupational Therapy appointment will hurry up. She really needs the help here. I have been trained to deal with her anxieties,  and the tools for that I still use. But they just don't work anymore. I need more specialist help. Someone who understands the sensory issues around food rather than the anxiety issues. They are different problems. I am trying to treat anxiety. Duck is sensory. I am not achieving anything worth mentioning. Perhaps if I had been listened to when Duck was assessed at 3.5 years old, or again at 7 years old we would not be here now. Its frustrating that I have said for so long there are problems, and I have had several people agree there are a few autistic traits, but nobody has believed me enough to investigate properly. Now here we are with a child who is obviously struggling, she is struggling to maintain academically, struggling with friendships, struggling to grow up and struggling with severe anxieties. And people are worried. I too am worried about Ducks mental wellbeing.
I went out Saturday night with friends. I really needed a break from everything. I had told Duck I was going, and she was totally happy. I had a lovely kiss and goodbye with no moaning. She even went to bed well for daddy.
We are off swimming today. Both kids love Coral Reef water world and we have not been for ages, so I decided its time to go. Son loves it there and is a really competent swimmer, although he does have a very nervous mum when he heads off into the rapids way ahead of me as I have to support Duck. Duck loves going, but she gets anxious around water. We spent 3 years on her lessons for swimming and she finally completed 15 metres. She just panics. It also gets very noisy so she gets anxious over that too. But she still loves going. So we head there first thing, hoping to be in and out by the time it gets too busy. Son will be on the fastest flume, Duck and I will be on the family slide. Son will spend most of his time under the water (much to my terror), Duck and I will be floating on top. This is what weekends are made for.

For anyone who does not know, we think Duck has a type of autism called Pathological Demand Aviodance (PDA). Its not well recognised within the NHS despite being recognised in the UK for over 30 years. I have started a petition to get PDA recognised. Please sign and share. You can find the link HERE