A blog that explores the concept of PDA as well as offering an insight into life with a child with PDA

This week Mollie has successfully been playing with three sisters who live across the road from us.  This is wonderful but the situation does bring about new challenges and hurdles to jump over.  Mollie can become very hyper, anxious and obsessive when she is playing with other children which can then cause a lot of stress and anxiety for us and a lot of stress for them.  Here are just a few of the issues that we have dealt with in the last few days.

  • She needs her friends to have full access to our home which is stressful.  Four kids running round, screaming, banging doors, toys out everywhere and nothing being put away or tidied up.  I don’t mean for a few hours either I am talking from 10.00 am till 7.00pm. This is not the fault of or instigated by the girls, who are lovely, this is Mollie’s way of trying to facilitate friendships.
  • The moment I say no or won’t facilitate something I am called a ‘F***ing Bi*ch’, doors are slammed and she starts to go into full panic attack territory.
  • If the sisters are going somewhere then she instantly wants me to drop whatever I am doing so that we can follow them like a couple of stalkers.
  • She basically becomes obsessed with being with them for every waking minute and facilitating everything that they want to do.
  • Trying to implement some non negotiable boundaries resulted in a major panic attack yesterday.  We were all stressed and I didn’t initially handle it very well.  I have flashbacks to how our life was a couple of years ago and it is a place that I simply can’t revisit.
  • Even though she appears to be less dominating and explosive with the girls than she was a couple of years ago I am simply on pins waiting for the explosions and subsequent meltdowns to come.  This however is my problem, not Mollie’s, and so far she is actually coping well with her own personal behaviour towards the girls.  However I am sucking up the consequences of her anxiety with extra control been excerpted over me when they go home.
  • I told Mollie that socializing was having such a profound affect on her that it was ruining the calm that we had built up in our home and that perhaps it would be better for her to stop before things got out of hand.
  • At this point she broke down, sobbed, she was fighting for her breath and so I had to get her a paper bag for her to breath into.  I just can’t face being alone again she whimpered.  My heart melted, it was time to work out how to manage this situation in a mutually beneficial way.

“I tell you what” I said to Moll “how about I go and fetch a pen and paper and we can come up with a plan so that we both know where we are, perhaps we will both feel less stressed if we have a timetable to work to.  Plus we need to try to understand how each other feels so that we can both try to adjust our own needs for the benefit of the other person”

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Over the past few days we have been discussing empathy, social interaction, why things are confusing for her and how NT’s may struggle with understanding her PDA quirks.  It was these discussions that formed the foundation and the information on one of my previous posts.  I must stress that, I believe, it is only down to the two years of social detox and the work that was done during those years that have enabled us to reach this plateau now.

So Moll and I discussed our issues and our problems.

  • She felt in a state of permanent panic because she wanted to do and to facilitate whatever the sister’s wanted because she felt that this was the only way that she could keep them as friends.  A complete lack of self-confidence and self-worth means that Mollie only thinks that kids will want to be friends with her if she is giving them stuff, in this case our home as a playground.  She hopes that by having huge pulling power in certain areas e.g. choice of toys, a large play area and tasty treats that this may effectively bribe other kids to play with her and to counterbalance her need to control.
  • She says that although she understands that people have feelings she often doesn’t care about those feelings if she needs something.  I told her not to worry about that and that it doesn’t mean that she is a bad person but that her brain simply has a wiring system that doesn’t automatically produce instant empathy.
  • I explained to her that I find it very stressful if my home is being used as a play area because I can’t relax if I know that no rules will be followed.  The huge amount of mess on top of an already heavy workload of tidying/cleaning can really push my anxiety levels up to the max.  I explained that I can’t help it but that mess stresses me out like demands stress her out.  Having control over my house and mess has become somewhat of an obsession for me.  I need to keep some feel of control over it.
  • I said that I could really understand her point of view and I hoped that she could understand my point of view and that we could both help each other.  I also explained that I didn’t want to place rules and boundaries to stifle her or to control her but that it was a way of keeping me calm which would mean that I would be more relaxed and less stressed with her.

Ok so the first important thing is for Mollie to feel that she has a lot to offer, as a person within her own right, so that she doesn’t feel as if she has no value as a friend unless she is offering other kids bribes and treats to play with her.  So Mollie and I made a list of all of her good points and her ‘not so good’ points.

Good Points
lots and lots of fun
A fabulous Imagination that enables her to come up with lots of fab games
A very loyal friend who will defend her friends against anyone
Can be very stubborn which can be a good trait
Full of energy
Very excitable which can make quite boring activities very enjoyable

Not So Good Points
Can be very stubborn which isn’t always a good thing
Needs to be in control and in charge (but not as much as previously)
Can be volatile, lash out and say mean things (however not anywhere near as much as previously and all kids can be mean at times)

So on the back of this task Mollie could see that she had plenty of good and appealing aspects to her character and that the negative aspects, which we all have, aren’t as prolific as they used to be.  So all in all why wouldn’t other kids want to play with her solely based on her own merits?

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Off the back of our conversation Moll and I came up with a daily timetable which we both thought was acceptable and manageable.

  1. We agreed that we would keep the house empty of kids until midday.  This gave me the chance to get housework and chores done in a quiet home.
  2. However she could play with her friends in the garage which is attached to the house and has access to the garden.  Also our garage is mainly used to store an overflow of Moll’s toys and it is carpeted and rather pleasant to be in.  Especially during the summer months, the doors can be left open letting the sunshine in.
  3. Between midday and 5.00pm they could all play in the conservatory, which is Mollie’s playroom, and her bedroom.  However I did not want them randomly roaming all around the house, as and when they chose to, and I would prefer them to stay in the conservatory.
  4. Between 5.00pm – 7.00pm I would be grateful if they could return to the garage and garden option which gives me a chance to prepare the evening meal in peace and to tidy the conservatory ready for the following day.
  5. At 7.00pm ‘House Sherwin’ is closed for the day and any further play will need to be conducted in the street.
  6. An important rule to help me feel calm is not to have too much mess out at one time and to try to tidy toys away.  I don’t mind tidying up for an hour at the end of a play session but any more than that is too much.
  7. If the girls are going out somewhere I can’t just drop whatever I am doing, jump in the car and follow them.  Also their parents may not want me following them around.  We will use this time to do things together.  I explained the importance to Mollie of not becoming obsessed with the sisters.  I told her that if she could manage to keep a healthy balance of playing with the sisters but still be able to do other things too that this would be better for her in the long run.
  8. The timetable has been agreed by both of us and she has stuck it to the fridge door.

So far things are going smoothly and she is sticking to the rules.  I would also just like to add that Mollie does have the option to play at the sisters’ house and that play dates aren’t a one way street.  However I think that Mollie likes to keep play dates at her home so that she feels she is attracting the girls to play with her and also because home is where she feels safe.

We had a lovely chat with the girl’s parents yesterday to try to adequately explain Mollie’s difficulties ready for when problems begin to rise.  What a wonderful and refreshing to change to have a full and frank discussion with parents who were not only empathetic, understanding and open minded but who had also taken the time to research PDA before they came over.  Ironically ‘Dad’ had been reading the information cards that I had recently created without realising that it was my blog.  Lots of people can try to understand but it is very rare to speak to people who do actually’ just get it’ and you know that they aren’t secretly thinking ‘Jane & Lee just need to be firmer and to put in some firm boundries’.  They are going to work with us, as a team, to try to make Mollie’s friendship with their daughters as successful as possible.  Mollie may become too much for the girls to cope with, which I do understand, but at least I won’t feel that I have to keep justifying why we have to deal with her in the way that we do.

I have prepared the following information sheet to try and inform other parents and neighbours of Mollie’s difficulties.  A few of my neighbours already know and understand but I have noticed that there are a lot more children coming out to play.  Each new child comes with a new set of parents and adequately explaining PDA is one of the most difficult things to do.  Some may understand and make allowances and some may not.  All I can do is offer the information in the hope that it has the desired effect.  Sometimes just something as simple as how you say something rather than what you say can make all of the difference between a happy child or one that is on the verge of a meltdown.

Please click here to view my information sheet for new parents and neighbours that may come into contact with Mollie.  I know that many parents find explaining PDA to others is one of the more difficult aspects of having a child with PDA.  Perhaps this information sheet about Mollie could be adapted for your child?

How PDA affects Mollie

 

 

 

As promised here are some less cluttered information cards.  I will hopefully be creating lots more of these using the same format in order to create some kind of branding.

Web Image of PDA v ODD

oddpda-simple

For a clearer version here is the pda version
The differences between PDA & ODD

 

Web Image PDA V Typical ASD

pdaasd-simple

and for a clearer image here is the pdf format
The differences between PDA and Typical ASD

 

This is an information leaflet that I have created to try to explain Mollie’s difficulties and to hopefully promote a degree of understanding with my neighbours now that Mollie is playing outside again.  This is personal to Mollie but it can be duplicated and personalised for your own child.

my-pda-clear

For the PDA version please click below
How PDA affects Mollie

I hope that these are useful for you all.

 

PDA Information Cards

I am the first to admit that I am not the most technical of people. In fact I am pretty hopeless and so please forgive my attempts at these information cards.  I do, however, hope that they may help to answer some of the more frequently asked questions that parents often ask.  I also hope that they may be useful in helping to dispel some of the misconceptions that many professionals have regarding PDA.

All of the cards are available in either a Jpeg format which can be shared on facebook and other forms of social media or you can click on the link below each image and download the card as a PDF.  You may need to click on the image and enlarge it to make the text more readable.

I appreciate that there is a lot of text on these cards, however the purpose of them is not to give quick bullet points, but is to give full and detailed answers to some of the most frequently asked questions but in a visually more pleasing manner than straight forward text.  The target audience for these information cards are for parents and professionals who have a vested interest in PDA.

I shall also create some information cards that are less descriptive and more to the point which may be suitable for more general posting around facebook.

 

Card One:  Is PDA another label to simply describe ODD (Oppositional Defiant Disorder)?

oddpda-pdf

Please click on the link below to download this card as a PDF
The differences between PDA and ODD

 

The same card but in a different colour way

oddpda-pdfred

Please click on the link below to download this card as a PDF
The differences between PDA and ODD Red

 

Card Two: How does PDA differ from a typical presentation of ASD?

asdpda-pdf

Please click on the link below to download this card as a PDF
How the pda profile differs from a typical ASD profile

 

The same card but in a different colour way.

asdpda jpedred

Please click on the link below to download this card as a PDF
How the pda profile differs from a typical ASD profile red

 

Card Three: Why is PDA different than Reactive Attachment Disorder?

Why is PDA not the same as Attachment disorder

Please click on the link below to download this card as a PDF
Why PDA is not Reactive Attachment Disorder

 

Card Four:  This is my interpretation of whether it is possible to have a dual diagnosis of PDA and Autism or PDA and Asperger’s.  This is a question that is often asked and always creates much discussion with various points of view.  The information on this image is ‘my interpretation only’ of the information that is currently available.

dualdiagnosis jpeg

Please click on the link below to download this card as a PDF
Can you have a dual diagnosis of PDA and Autism or PDA and Asperger’s

I do hope that these information cards are useful and that they are copied and shared.

 

 

In order to assist Mollie navigate the ‘Neurotypical World’ as successfully as possible we have decided to try to fathom out the mysteries of neurotypical social interaction.  Just what does go on in the neurotypical mind and why does it appear to react so adversely to the PDA mind?  I would like to point out that neither mind is superior they are simply different but equal.

Our home is Mollie’s PDA world this is where she can fully and truly be herself without the need to moderate, apologise or to adapt her behaviour.  People entering our ‘PDA World’ are expected to accept, respect and to try to understand Mollie for who she is and to not expect her to be any different.
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Therefore it stands to reason that if Mollie wants to dabble in the ‘Neurotypical World’ that she will need to show the NT’s the same respect.  She will need to accept, respect and to try to understand the NT’s.  I don’t see this as changing who you are so that you can fit in, I simply see it as respecting somebody else’s law’s, custom’s and traditions.

I compare this situation to having two different cultures with different languages, traditions and so on who are then forced to live in the same country.  While the two cultures may have there own unique communities these communities will invariably cross over and need to co-exist harmoniously with each other.  It is important to remain true to oneself and to stand by your own beliefs but you can still have respect for the different beliefs of another individual even if you don’t agree with them.

I am not a religious person at all but both of my parents are extremely religious and regular church goers.  I respect their choice and their opinions on religion and I don’t feel any need to try to make them see my point of view.  They also respect that religion isn’t for me and don’t try to force their views on me although it does trouble and worry them that I am not religious.  Out of respect I make a conscious effort not to blaspheme or say anything that they may find offensive when I am with them.  This doesn’t mean that I can’t be the real me when I am with them because I am, I simply have to make very small adjustments so that I am respectful of their views.

This is what I am hoping for with Mollie, that she can still be herself, but hopefully adjust some of her natural behaviours that may upset or offend the NT world.  If she can then both worlds will be enriched for the better.  The NT’s will learn the wonders of the PDA mind and Mollie’s amazing imagination can make her great fun to play with for other children.  If she can learn to moderate her less desirable behaviours, which may be made easier by understanding how the NT mind functions, then she can enjoy friendships and say goodbye to isolation.

That’s the plan anyway and it will either work or fail miserably but any small amount of progress, no  matter how tiny, is better than none at all.
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Important things to know about the NT brain that may help kids with PDA understand this strange and confusing race a little bit easier.  I cannot emphasis enough that the point of this post is not to tell individuals with PDA how to behave.  That is entirely up to you.  This is simply a guide to try to help my daughter cope in a ‘NT world’ because she wants to socialise again and I am sharing these thoughts in case it can be of any help to anyone else.

For the purpose of this information in order to try and keep things as clear and as straight forward as possible individuals with a neurotypical brain shall be referred to as NT’s and individuals with a PDA brain shall be referred to as PDA’ers.  It isn’t my intention to define an individual by their label but to simply keep the information easy to follow.

  • NT’s rarely actually say exactly what is on their mind which can be confusing because the PDA brain appears to do this naturally.  NT’s are constantly worrying and thinking about what they say and how they say it so that they don’t upset, bore or annoy the other person.  Because this comes natural to us it can be very confusing and shocking for NT’s when PDA’ers don’t show them the same thought for their feelings and just blurt stuff out.  NT’s may wrongly assume that you are not a very nice person which is very hurtful for you especially when you may not understand why they think this about you.

Advice

NT’s out there please try to be tolerant and to not take offence at the PDA forthright way of saying things just like it is.  PDA’ers may not be intentionally trying to shock, hurt or upset you it is sometimes simply a case of not truly understanding how these words may feel for you.  PDA’ers may simply just not be blessed with natural intuitive instinct and empathy, this doesn’t mean that they are uncaring it just means that their awareness of somebody else’s feelings in relation to their own actions may not be as finely tuned as yours.  You wouldn’t blame a blind man if he bumped into you so please don’t blame or judge a PDA’er if he/she occasionally verbally bumps into you.  On the other side of the fence words can really hurt and so if you have PDA just try and think about how much words may hurt you.  Because when you direct those words to other people it can really hurt them to.  It is ok to be yourself and to say what is on your mind but it doesn’t hurt to try to ‘not’ say hurtful things to people if you are aware that those words can hurt.  If your not sure if the words hurt then just imagine how you would feel if those words were said to you!

  • NT’s naturally know and understand their pecking order in society and will automatically be inclined to show adults and authority figures respect.  Kids with PDA do not appear to have this natural instinct and find it hard to understand why children are treated and expected to behave differently than adults.  If its ok for adults to swear, be in control, give orders and do what they want when they want then why should it be different for children.  Kids with PDA may therefore expect to be shown the same respect and allowed to have the same freedom as adults and may talk to adults as an equal.  This can be very confusing for Neurotypicals because in their culture children should be compliant, accept rules without question, not answer adults back and basically just do as they are told.  A kid with PDA may simply be viewed by the NT as defiant, rude and out of control when infact the kid with PDA is possibly only mirroring the behaviour of adults.  The kid with PDA simply wants to be allowed to be his or her own person without all of these social constraints that stifle their true self and make them conform.  Mollie once said to me “why do parents treat their kids like slaves”? 

Advice

please try to be understanding that a child with PDA doesn’t mean to be rude or disrespectful it is just that in their culture this pecking order doesn’t exist.  When your mind is wired for everyone to be equal and treated the same regardless of age it is really confusing to be expected to be subservient simply because you are young.  If you are NT then your brain is specially wired to accept your pecking order in society without any undue stress or embarrassment.  If you are PDA then this aspect of the wiring process is very different and being expected to behave and to be treated ‘like a slave’ is stressful, embarrassing and humiliating.  On the other side of the coin perhaps the PDA’ers can meet the NT’s half way so that it isn’t such a shock to their delicate systems.  If you are playing out perhaps it could be possible to mirror some of the behaviour of other children as how they interact with adults.  I don’t mean to stop being who you are but to simply try and talk respectfully without shouting or being rude.  Telling a peer to ‘shut up’ or getting extremely annoyed with them is one thing but if you do that to a NT adult it may be too much for them to accept.  By toning the natural you down just a little bit may help you keep those adults on side and this will be beneficial to you.  If NT adults like you they will want their kids to play with you.  Being nice can be a good way to keep things within your control!

  • NT’s can instinctively pick up if you are upset, angry, happy or nervous and they will try to help and to adjust their behaviour according to how you feel.  If they don’t pick up on how you are feeling you can simply tell them and they will understand and try to help you.  NT’s don’t need to see big and dramatic reactions in order to be able to understand a situation.  In fact big and dramatic reactions can frighten NT’s or make them feel angry towards you.  PDA’ers may not necessarily pick up on the subtle clues that NT’s pick up on.  So it may be wise to explain how you feel with explanatory language but keeping calm E.G. “those words hurt me so much that I am crying inside and my heart is breaking, even though you can’t see it on the outside that is how I am feeling on the inside”.  PDA’ers only appear to sometimes respond to strong reactions but a strong, loud or angry verbal reaction is likely to evoke high anxiety and stress.  Keeping a calm voice but explaining with visual terms that the PDA’er can relate to may help them to understand how stressed or upset their behaviour is making you. 

Advice

PDA’ers constantly have such high stress levels and are so anxious about keeping control of their own environment that it may not always be possible for them to adjust their own actions in order to accommodate the feelings of an NT.  If you are NT you are blessed with lower stress levels and you do not have extreme anxiety about controlling your environment and so you can and should be more flexible.  NT’s should find it far easier to put their own feeling to one side in order to accommodate the PDA’er.  If you need an individual with PDA to alter or moderate their behaviour because it is becoming too much to deal with try and use the expressive language as explained above in order to help the PDA’er understand how you are feeling.  PDA’ers you don’t need to shout or be over the top to make your point with a NT, infact you are more likely to make your point and have your needs accommodated if you can express yourself in a calmer manner.  Not shouting or blowing up, if you can control it, is more likely to get you what you need.  If you expect and need to be treated calmly and with respect then that is how NT’s need to be treated too.  By doing this you are more likely to stay in control of yourself and the situation.  It is also important to remember that even NT’s can, at times, experience high levels of anxiety when they are being controlled.  At times NT’s may need to be given a little bit of space so that they can have some freedom and reduce their anxiety levels.

At the end of the day progress will hopefully be made when NT’s and PDA’ers can fully understand, respect, accommodate and moderate how they interact with each other.  If we can both adjust, think about each others feelings, respect each others differences then we may be able to move forward in a positive direction.  This process starts with NT’s walking in PDA shoes so that we can fully empathise with them and then we may be able to teach them about us.

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I have passed this information onto Mollie and asked her for her opinion of my interpretations.  She says that, from her point of view, the information does reflect how she sees and interprets interactions.  However we are not saying, for one second, that this is how all individuals with PDA see the world or that it accurately reflects the difficulties of all individuals with PDA.

 

 

Following a two-year stint of complete isolation from the outside world Mollie has, very gradually, been making steady progress.  This has been helped greatly by the medication ‘fluoxetine’ which does appear to have reduced the anxiety that Mollie associated with the outside world.  I must add however that it does absolutely nothing for her impulsivity, need for control, demand avoidance or her inability to moderate her own actions/responses in relation to the needs of others.

We have gradually been able to encourage Mollie to take part in more activities outside of the home.  In the last few weeks alone we have managed walks, the park, bowling and swimming.  These recent achievements have given Mollie the confidence and the desire to attempt to play in the street with other children again.

Only a couple of years ago this was a complete disaster and was instrumental in our worst and most difficult period with Mollie.  It will be interesting to see how Mollie will cope now that she is two years older, has more understanding of her condition and has slightly lower anxiety levels due to taking ‘fluoxetine’.  While I am so happy to see her engaging with other children and playing outside in the fresh air I can’t help but have extremely mixed feelings about these recent events.  At the moment she is coping but I am concerned about how she will cope with this level of socializing as she becomes more exposed to it and when the, all to familiar, ‘honeymoon’ period wears off.    The thought of going back to where we were a few years ago simply makes my stomach churn because I really don’t think that I could do it all again.

Mollie has already had a minor blow-up at one of our neighbours.  He had very kindly noticed Mollie’s Ipad unattended in the street and so, for obvious reasons, he took it inside for safe keeping.  Mollie was playing with his daughter at the time and both he and his wife have always been very accommodating and patient with Mollie.  When Mollie realised that her Ipad was not where she had left it she, understandably, became extremely stressed.  However once Mollie realised that her Ipad was safe and sound in her friend’s house she proceeded to tear a strip off the parent responsible for actually protecting her prized possession.  I can understand her confusion because he hadn’t informed her of what he had done, which would have saved her a lot of stress and upset.  However tearing a strip off our neighbour is not conducive to her being liked or conducive to other parents wanting their children to play with her. PDA or not some levels of behaviour simply aren’t seen as acceptable and so if Mollie is going to successfully interact in the ‘outside world’ I really have to try my best to help her to adjust some of her behaviours.

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I think that one of the main difficulties for Mollie is that she appears to have huge difficulty with empathy at an emotional level. She just couldn’t see the other parent’s point of view or that he had done what he had done to protect her possession.  Instead she just saw red mist because her sole interpretation was seeing the incident only from her own perspective and the stress that it had caused.  She just didn’t, for one moment, view the incident from his perspective.  I would have dealt with the situation, even as a child, by saying thank you and feeling mightily relieved. As an older child I may have respectfully asked if he could, in the future,  inform me if he was saving something for me so that I didn’t worry?  Mollie’s way of dealing with it was to be rude, disrespectful and feel completely within her rights for doing so while not thinking for one moment of how her behaviour would be viewed by the other parent.

I understand Mollie and why she reacted in the way that she did but I thought that I would use this opportunity to delve a little bit deeper into her mind-set.  The reason being is that although Mollie is understood at home, she is not understood in the ‘outside world’.  Behaviour that we view as simply ‘Mollie being Mollie’ is ok at home because that is the one place where she can truly relax and be herself.  However if she wants to play and be accepted in the outside world it is imperative that I try to teach her what behaviour is and isn’t acceptable and why that is.  She knows at an intellectual level but she doesn’t appear to understand why at an emotional level.  I need to try to reach her emotional understanding of situations.

If she wants to interact in the outside world she will have to play by some of their rules or it will be a failure.  If this happens there is only one looser and that will be Mollie.  I desperately want her confidence to grow and for her to be able to function more successfully with her peers and their parents.  This will not happen unless she can begin to understand how a neurotypical thinks and views social interaction in the same way that I have had to understand how an individual with PDA thinks and views social interaction.  Hopefully, with education on both sides PDA and neurotypical can meet somewhere in the middle.  The ‘outside world’ will need to understand and to accommodate Mollie’s need to feel in control but she needs to understand that some of her behaviours E.G. speaking disrespectfully to a child’s parent, using abusive language or hitting another child just aren’t acceptable or ok.

Understanding Mollie’s Mind

  • Mollie appears to view and register people as objects rather than people with fears, needs, anxieties and so on.  She even mentioned on one of her mini posts that she used to wish that her friends were dolls.  She has always used me as a toy, a plaything for her own entertainment.  Dressing me up, doing my hair, my make-up, telling me what I can play with and what I can say.  Telling me off if I ever veer of script of don’t conform.
  • With the family she takes delight in playing practical jokes, stealing our items and then watching our reactions and the drama unfold.  She never appears to make any concessions for how this method of entertaining herself may actually feel for us.
  • People appear to be things that she uses for pure entertainment without understanding the impact that she  has on them emotionally and how this may make them view her.
  • She has never been able to accommodate my needs or adjust her own behaviour if she was upsetting or stresses me out.
  • She can use empathy to manipulate and control but it is almost as if this is at a purely intellectual level with no emotional attachment at all.  Mollie appears to move people around in her environment like a master chess player moves his chess places. Skilfully moving his pieces around a board in order to achieve the desired outcome.
  • Mollie can easily understand what and why certain things upset her but then she doesn’t appear to have the ability to use this information as a valuable insight into how her actions can evoke these feelings in others.

This description of Mollie makes her appear callous and unemotional but I don’t think that this is the case.  I just think that the part of Mollie’s brain that should process the thoughts and needs of others i.e. empathy appears to be misfiring.  She may be able to strategically plan how to keep people where she wants them but I really do think that she has extreme difficulties in understanding how this may make other people feel.

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Mollie has also made the following comments which I find extremely interesting and which has also helped me to understand her a little bit more.

  • Mollie has openly admitted and expressed confusion when I asked her if she thinks about the needs of others when she is interacting with them.  When I asked her if she ever wondered how another person may be feeling when they are playing with her she was mystified.  I tried to explain this concept to her and I informed her that when I am with another person I just automatically know if I am boring someone, upsetting somebody or hurting someone and so I adjust my behaviour accordingly.  Mollie says that she never does this when she is interacting with other people and appeared rather astonished at the whole concept.
  • Something that is really interesting is that when I was discussing the incident that had occurred with our neighbour she said that she had reacted strongly because she needed him to know that he mustn’t do it again.  In her eyes she can only make her point, safe in the knowledge that the other person understands her, if she shows an extreme reaction.  She had assumed that simply telling him not to do it again would not have the desired effect because he wouldn’t adequately understand her stress and pain unless she showed him.
  • This is made more interesting by the fact that Mollie can, at times, show empathy and adjust her behaviour on the rare occasion that I have an extreme reaction.  Sometimes, when I am desperate, I may have a little meltdown of my own.  I may visibly show how naffed off I am with her at that moment.
  • So, is it possible that Mollie can only pick up on and therefore react to strong and dramatic reactions.  Therefore, does she interpret this to mean that in order for her to invoke empathy in others that she also needs to use similar, strong and dramatic reactions.
  •  If a normal reaction is too subtle for her to pick up on or to successfully read then she may assume that the neurotypcial world is the same which could explain, to a certain degree, why her reactions are always so dramatic and over the top.

The neurotpical world relies on  subtle signals between us and calm discussion so that we can navigate the social highway with the least disruption.  Perhaps Mollie cannot function with subtle and needs extreme signals to navigate the social highway.  Is this where the two worlds collide and cause her so many problems.

If Mollie is going to succeed in her latest venture then I have to think of ways to try to help her to understand that some aspects of her character are just not going to be tolerated in the outside world and why.  I also need to help her to understand what another person may be thinking, their reasons for doing certain things and how they may interpret Mollie’s behaviour towards them.  This is made all the harder by the fact that Mollie is highly resistant to any form of teaching, only opens up occasionally and does not like discussing her feelings or being told how to behave.

I have told her that I love her and that she will always have me in this world.  However I have also told her that if she wants to interact in the outside world that she needs to learn about neurotypical people and to try to understand them in the same way that I had to learn about her.  I have told her that I can help her and that I can teach her in this area but that she has to be wanting and willing to learn therefore she can come to me when or if she ever wants to learn more.

We have discussed the incident with the neighbour and we used role play to try to assist Mollie to see the other person’s point of view and how that person would have viewed Mollie.  We left the Ipad in the garden and she pretended to be the neighbour while I narrated what he would have thought “Oh dear, Moll has left her Ipad out, it could get stolen and so I will take it inside and keep it safe for her”.  Mollie took the Ipad inside and then I knocked on the door and started to tear a strip off her.

I then proceeded to explain that reacting in the way she had was not very nice for the neighbour because he had only been doing a good turn.  I then pointed out that the neighbour would possibly think “I don’t like this young ladies attitude and I won’t be allowing my daughter to play with her again”.  When she was in role play she did seem to be able to understand the other side of the coin a little bit more.  With Mollie it would appear that she has to actually experience a situation in order to know what it feels like.  Her social imagination may appear, on the surface, better than you would typically see in someone with ASD but, in Mollie’s case, it really does appear to be lacking in any depth.

This doesn’t mean that Mollie doesn’t have the ability to feel true empathy at an emotional level but simply that we may need to find a new way of uncovering it for her. 

My friend Julia has PDA and she has extremely good empathy compared to Mollie and indeed to most people.  So, as PDA is a spectrum condition I am sure that difficulties with empathy can vary between individuals and I can only speak from my experiences of Mollie.  However I only know Julia as an adult and so I cannot speak for how she perhaps expressed herself or appeared to others as a child.  Was her empathy always there naturally or is it something that has become much better with maturity?  Time will tell for Mollie but hopefully the more I can learn and understand her the more successful ‘Team Sherwin’ will become.

janesherwin:

Please take the time to read this really informative post written by an adult on what it actually feels like to have PDA. The only way that we can really help our children is by truly stepping inside their minds. I don’t know who the author of this article is but I hope that she finds her way to our PDA community if she hasn’t done so already.

Originally posted on Diagnosis Withheld:

Imagine if you felt such profound anxiety every time someone demanded you to do something. At times it’s just a little sting here and there, other times it triggers anger and resistance. It gets so bad that even when no one is asking you do anything the possibilities of them again demanding something out of you race throughout your mind. You are in so much emotional turmoil that you feel it as a physical sensation in your body.

You know that you have to tell them but you’re worried about being faced with more resistance and those people demanding more out of you. It doesn’t matter how they react anyway because every time you reached that moment to explain it to them you can’t. It’s like there’s something in your brain blocking you from saying it.

But you have to get rid of the pain. You haven’t had a drink…

View original 1,158 more words

Beam Me Up Scotty!!

Well it’s been an interesting few weeks with Mollie she has completely ditched her repetitive viewing of her ipad and lost any capability of entertaining herself for more than five minutes. In short she is really doing my head in at the moment and my ability to be completely controlled day and night while simultaneously having to play children’s games has reached breaking point. As much as I try to accommodate Mollie’s needs I have had to explain to her that she must give me a break or I will be at risk of losing my temper and having a bit of a meltdown myself which I always deeply regret. As much as she may want me to be like a robot unfortunately, for her, I am not and there is only so much that this human brain can take.

Her hyperactivity levels and inability to stay focused or to concentrate on any given task have reached new heights. Every Barbie box will be upturned in the lounge leaving little room to either see the carpet or place your feet. Five minutes later and the lounge is discarded so that a glitter bomb can be made in the kitchen. Glitter, glitter everywhere but once she has been doing that for a grand total of five minutes we must move onto the next project. Plaster of Paris, making moulds and painting them is the next activity on the list. Oh Yippee even more stuff out and more mess, I can’t keep up with the tidying before she is embarking on a new project and demanding help and interaction. Ten minutes later and the cupboard under the stairs has been emptied and about twenty pairs of shoes, Christmas wrapping paper and a few stray bags are strewn along my hallway so that she can make a den.

Thank God it’s now 4.00pm and time for Mollie’s Personal Assistant funded by Direct Debits via Social Services to arrive. I breathe a sigh of relief and begin to tidy up my downstairs which now resembles a scene from ‘Can’t Stop Hoarding’. She runs upstairs like a Tasmanian Devil and to my horror has decided that today’s activity with Ann shall consist of rearranging my upstairs.

As if it isn’t bad enough that she sleeps in my bed every night she has now made the arrangement appear slightly more permanent by moving most of her trinkets, prize possessions, cuddly toys and various other articles into my bedroom.

BEAM ME UP SCOTTY!!

Mollie has also devised a set of house rules which we must all abide by. Failure to abide by the rules or to inadvertently break one of them involves a punishment of being handcuffed to the banister at the bottom of the stairs for varying degrees of time dependant on the severity of ones crime. For those that aren’t fluent in dyslexia a translation of Mollie’s rule list and the punishment time have been set out below this image.

 

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  1. Take shoes off when inside 5 Mins punishment GUILTY YOUR HONOUR, TWICE!!
  2. No hurting Rosebud 20 Mins punishment
  3. Don’t let Rosebud close to an open window 20 Mins punishment
  4. No eating people’s chocolate without asking 10 Mins punishment
  5. No shouting 5 mins punishment
  6. No being mean to Rosebud 10 Mins punishment
  7. No making fun of people 10 Mins punishment
  8. No kicking people out 20 Mins punishment
  9. No stripping 20 Mins punishment (not a normal activity in our house I must stress)
  10. Wash hands when you have finished cleaning 20 Mins punishment
  11. No trumping at people 10 Mins punishment
  12. No stealing 10 Mins punishment
  13. No killing 100 Mins punishment (again not a normal activity in our house but with only a 100 min punishment it could be tempting)
  14. No having sex until 18 100 Mins punishment ( again not an activity that we actively encourage our children to engage in)
  15. No hovering without permission 10 Mins punishment GUILTY YOUR HONOUR!!

On Saturday I spent twenty minutes handcuffed to the banister for the heinous crimes of hovering up without permission and entering the house wearing shoes on two occasions. Jake also had a ten minute stint on the step of shame for eating her ‘Cookie Dough’ ice cream. Fair enough I had warned him not to eat it, his excuse was that it had been in the freezer for weeks and so she obviously didn’t want it. Big mistake honey pie!!

Just when I thought that things couldn’t get any worse they did. Last night Mollie decided she wanted to give me a makeover. I’m not sure about the results but ten years younger it does not make me look. I then had to open the door when Lee came home and chase him down the street with my Grim Reaper scythe. I was not amused but the neighbours were and a few small children ran in crying.  Thank goodness she has gone to bowling today for a few hours with my dad, a short break is needed by one and all.

 photo janepic_zpsb113c88d.jpg

So why the drastic change, could it be a single event, could it be a cumulative effect of events or could it just be a change of cycle. The possible culprits could be:-

  • She has been in contact with one of her friends from her last school placement and he has asked Mollie to be his girlfriend to which she has agreed. She has been enjoying the social interaction of a peer during the evenings on Skype and Minecraft. Unfortunately we have arranged on two different occasions for the Mollie and her boyfriend to meet up only for the boy’s mum to cancel at the last-minute on both occasions. So we have had to huge build ups and two disappointments to deal with. He has also been off-line for over a week as a punishment for something that has occurred at home and Mollie has not dealt with this very well. Could this set of event be a contributing factor?
  • Last week we attended an appointment with Mollie’s doctor to discuss how she is coping on the fluoxetine that he has medicated for her. The doctor is lovely but due to a lack of understanding re PDA his approach is less than PDA friendly. She hates going due to the demand and leaving the house is a major stressor for Mollie even when it is something that she wants to do. She is already on edge by the time we get there and she is immediately met with lots of direct demands, direct questions about how she is feeling, she is informed that she needs to go out more because she is missing out on things and a rather confrontational statement of ‘If you want medication you need to keep your appointments with me and it’s as simple as that’. On the way home she said how angry she was and how bad he had made her feel. She said that he made her feel as if she had a disease that needs to be stamped out. She also stated that she isn’t stupid, she is fully aware that she is missing out on things by being housebound and that she doesn’t need it rubbing into her nose. She then said it isn’t that I won’t go out it’s just that I can’t always do it. I shall make arrangements to see the Doctor prior to Mollie’s next appointment in the hope that I can possibly smooth over some of these issues. He has agreed to read my blog and so if you are reading this please don’t take it personally but I have to report any incidents that may then be causing me issues or being reflected in a change in Mollie’s behaviour.
  • Some great news is that Mollie had her ears pierced on Sunday. She is super pleased with herself and she is doing a fab job at keeping them clean and turning the earings. The problem is that she has become completely obsessed with ear rings and waiting six weeks before she can put any other styles in is driving her crazy. This very much reminds me of how things can be when we are waiting for a much looked forward to event to finally arrive E.G. Christmas or Birthday’s. Could this be another factor compounding the other two.
  • Could the excitement of doing her blog posts and videos last week have triggered a complete spell in the opposite direction.  She has completely avoided doing anymore but I am hopeful that if I completely pull back she will do some more in the future.

On the plus side she is still accessing the outside world more than she was and today she has even played in the street with the other kids for a short while.

All in all everything is ok but I am hoping that this current phase of complete hyperactivity and being unable to concentrate on anything for longer than a millsecond in conjunction with the need to make mess, mess everywhere will pass before I am sectioned!!!!

Thanks for reading this post for more information on PDA please visit.

http://www.thepdaresource.com/index.html

http://www.pdasociety.org.uk/?legacy_domain

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