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

 photo empathy_zps237186af.jpg

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.

 photo d3d173b333354bf7a63ed9255bb4b705_zps1e0f04ae.png

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.

 

 photo janepic2_zpsf269ef94.jpg

  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

Hi, its me Mollie and I’ve been getting a lot of good feedback. So I’m writing a new post so here it
goes.

 photo autismunique_zps72c79897.jpg

Why I Always Interrupt People

So my mum keeps asking me this same question. Why do I interrupt peoples’ conversations? Well that’s a hard one, but I think its because I feel like who ever is talking gets all the attention. So I try to interrupt so I get the attention so that’s that.

A little tip for all those parents out there

I don’t know if it’s just me but when my mum ask me questions, like how do you feel when I tell you what to do, it annoys me and makes me anxious so that’s one tip.

 When people  talk loud at me

I don’t know why but when people talk loud its sounds like they are shouting at me and when people do shout it’s like a cold vibe goes down me and my nerves go dead bad.

Why I want to be control

I don’t have any friends but when I do I have to be I’m control. I always think if you want something done you’ve got to do it yourself. So I wish that they were dolls so I could play with them but then I realise that they are not dolls, so that’s why.  I also like to be in charge so that I can control my environment.  I feel really embarrassed and upset if someone says the wrong thing to me like “don’t do that” or gives me an instruction that I aren’t expecting.  If I’m in control there is less chance of this happening because I am in charge of them.  I like surprises that are good ones but I don’t like being surprised by someone else, including other kids, telling me what to do or what to play.

This is for pda kids that have siblings

I don’t know if this is just me but when my brother’s friends are over I have to play and follow then around because I’m jealous that I don’t have friends, so I tried to take his. But there was one problem, my brother and his friends are 5 years older then me.

Going Out

I stopped going out because I was scared that I was going to do something stupid infront of loads of people.  I feel dead panicky, just panicky.

Stealing Other People’s Stuff

A successful steal used to give me a great adrenalin rush.  I would steal loads of stuff and hide it and enjoy watching people look for their stuff.  I don’t do it any more, so don’t worry if your kids do because they will probably grow out of it.

 photo autismduck_zps323ab207.jpg

 

So that was my mini post I hope you like it and see you next time, oh and please view my video.

Hi it’s Mollie, I looked at my mums blog and I loved it, so my mum is letting me have my own category.

So hi I’m Mollie and this is my first post.  My mum is going to interview me now so here it goes.

1  How does it make you feel if you are asked or told to do something?

It doesn’t really feel anything, I don’t know that I am avoiding it, it is an instinct to avoid the demand.  It’s just how I am.

2 How do you feel if someone tries to make you do something right now and not in your own time?

My stomach goes in knots and I feel anxious like they are yelling at me.  I get a bit scared, but I don’t show it, if you are going down a big ride it’s scary and that is how I feel if someone gives me a direct demand.  I can react differently each time and I never know how I will react.

3 Why or what caused you to have huge meltdowns?

If you are a baby and you want something you would cry and shout until you get it. It is a bit like like, one reason for a meltdown is to get something. Another reason is if you have a brother and he is getting all of the attention and you think that your parents love him more than you then you will do what you need to get attention. Even if it means been told off, some attention is better than no attention. If you are so angry, it isn’t like normal people you can’t keep it inside, you can’t calm down, you have to punch or kick something, you have to release your rage through your arms and legs.  People telling me what to do or yelling at me makes me angry.  Its like Pompeii all over again except the volcano doesn’t stop erupting.  My family are the Pompeeins and I am the volcano.  I can erupt anyplace anywhere if they make one wrong step bang !!!

4 Why Don’t You Have Meltdowns Anymore?

I don’t know why, I don’t think that I have changed, I think that you have changed.  My environment is different now because I don’t go to school and so I feel calmer.  I am teaching myself things so I don’t need to be taught because I can find things out for myself.  I feel that because I’m at home I feel a lot safer and my nerves are down.  My anxiety liquid has also helped to calm my nerves.  Also letting me do my own thing and you and dad not making me stick to rules or boundaries helps me to feel calm and in control.

5 Do you feel bad if you hit or shout at someone?

If I hit someone I feel bad a second later and so I run off, I’m terrified and hope that they won’t see me or know that it was me. I’m scared that they won’t forgive me or forget what I have done.  I do feel regret, anxious and scared after a meltdown and that I need to move away and find new friends because I will have lost those.  That is why I could never go back to school after I had a meltdown and was restrained by the teachers.

6 Why do you think that some stuff isn’t rude? 

I see people like teenagers and adults say stuff and I want to fit in and so I say that without realising that its wrong because they laugh at swear words.  I’m like I’ve heard loads of people say that why is it wrong, my mum tells me that its wrong.  Because I’ve got a good memory I remember the words and use them when I am angry.  Sometimes I try to make it funny and my friend always laughs at that stuff but I can’t tell my mum any of that stuff.  Sometimes when I swear I don’t care because I get angry but when I see them upset I do feel the tiniest bit of remorse.

7 Do Punishments and Boundaries Work To Make You Behave Differently ?

No, punishments and boundaries don’t work because they make me mad instead.  Also punishments can make me feel scared and stressed out.  I’m not a doctor and so I don’t always know why things do or don’t work.

8 Why Do You Tell Lies or Make Up Stories?

Lies about my life and my family are to make me seem more interesting so I may tell someone that me and my family have been on the biggest roller coaster on the world.  I say things like this so that people will be interested in me and like me.  Other lies like for example saying “Jake, someone has run over Rosebud”  I would say because I think it is funny to see the reaction. I just think it is funny and I don’t naturally think how I have made that person feel.

9 How Do You Feel About Having PDA, Are You Happy?

Sometimes I’m not happy but sometimes I am happy because having PDA makes me special.  Sometimes I feel that having PDA really messes up my life, people can look at me weird and think that I am weird but I’m not.  I am getting used to it and starting to feel more comfortable and confident about myself.

10 What Are The Really Positive Things About You?

I am very funny, sometimes I say things that make people laugh without meaning too.  I am very lively and I have a great imagination.  I am extremely clever with a high IQ meaning that I can solve visual problems really easily.  I am very creative and really good at art.  Oh and I’m a brilliant actress, how do you think I lie so well and fool others into believing my stories.  I guess that I am a little bit mischievous because I really love playing pranks and practical jokes.

11 How Can Mum and Dad Help You To Be The Best and The Happiest That You Can Be? 

Just carry on with how things are now.  No discipline, rules, punishments or anything like that because it makes me more angry.  Mum’s and Dad’s need to be patient E.G. Don’t tell me to brush my teeth NOW!  Instead leave the toothbrush on the side and leave it for me to decide when to brush my teeth. Parents need to be fun and exciting so that if I slip up or do something wrong you need to stay calm and say its alright.  Make sure that I am in a safe environment.


 photo imnotcrazy_zps05dccaf4.jpg

Kids with PDA aren’t bad, their brains may be wired up different but they aren’t that different.  We all talk, walk, sneeze and get colds just like everyone else.  Don’t try and make them be good with treats, prizes or punishments. We need to be treated with respect, we need to be treated like an adult because we think more like adults than kids.  Try to accept us as different rather than try to make us, what others think of as, normal.

So this is Mollies mini post I hope you like it and can’t wait for more.

Please click on the link below to find out who Rosebud is and to meet me.

https://www.facebook.com/photo.php?v=605916209500417&set=vb.100002461317805&type=2&theater#

I have noticed over the years that Mollie’s life seems to revolve around cycles.  At one time I would be peddling like mad (no pun intended) to work against these cycles which is both mentally and physically exhausting.  Any improvements that are clawed back can be lost in an instant and in many instances even regress to a worse state than previous.  I realise that in order to save myself a huge amount of energy and stress that it is better to be flexible and bend with these cycles like a tree bends in the wind rather than to remain rigid and risk snapping in two.  In short I just need to roll with the cycles rather than to keep trying to stop or shorten any given cycle at any given time.

Some of Mollie’s Cycles

  • When she was younger we would experience weeks of good behaviour followed by weeks of challenging behaviour.  These periods did seem to alternate between home and school i.e. if Mollie was having numerous meltdowns at school then she was easier at home and vice versa.  This did form into a regular cycle and when I look back it was an indicator of the years to come.  Thankfully the cycles are now different because a change in Mollie’s management, strategies combined with reducing her exposure to anxiety triggers have seen a complete wipe out with regard to violent meltdowns.  Of course bending in the wind and going with the flow when it comes to physical violence isn’t acceptable and was one of our ‘non negotiable’ boundaries.  However it was reduced and eventually eradicated by us changing our approach and expectations rather than expecting Mollie to control her own behaviour when her overloaded system was making it impossible to do so.
  • Even now, in the optimum environment that we can provide Mollie with, we still have cycles of Mollie being more relaxed and amenable and weeks, for no obvious reason, when she is more anxious, short-tempered and snappy.  It is very much a diluted version of the behaviour/emotional cycle that she exhibited when she was in school.  I have become very fine tuned at detecting these subtle changes and adjust my own expectations accordingly.  From the moment she wakes up I intuitively know if it is a good day to suggest a bath or not!
  • Another familiar cycle is the very complex sleep cycle that Mollie exhibits.  We have weeks of Mollie happily taking her melatonin and falling asleep somewhere between midnight and 2.00 am, waking up anywhere between 9.00 am – 11.00 am.  This can be followed by weeks of Mollie staying up later and later and sleeping in later and later.  Eventually we go full circle and she is awake all night and asleep all day.  Eventually she will stay awake all night and start to creep her waking hours into the morning pushing to remain awake as long as possible.  At some point she will manage to stay awake until about 7.00pm and then for a few nights a normal sleep pattern shall be resumed.  However following a few days she will be going round the clock again and our of sync with normal sleep patterns.  So Mollie has a cycle of alternating between out of sync sleep and periods of taking her melatonin and maintaining a normal sleep pattern.
  • Hygiene is another cycle that rotates round and round.  We can have weeks of achieving, with very careful persuasion and persistence, daily teeth brushing, hair brushing and weekly bathing.  This is followed by weeks of only achieving personal hygiene targets once in a blue moon.  Her teeth will be yellow, hair greasy and matted and her overall smell is not a pleasant one.  Then for no rhyme or reason we will suddenly and without warning revert to a period of Mollie being far more pliable and easier to engage in personal hygiene.
  • Going out and leaving the home appears to be another cycle that is now developing a familiar pattern.  We can literally go for months when she will not leave the house at all.  Nothing can tempt her to cross the threshold of our front door no matter how hard we try to gently persuade, tempt or bribe.  This cycle tends to be less well-balanced than the other ones in that months of self-imposed exile from the world tend to be followed by only a short spurt of wanting to go out.  Never the less the pattern is becoming familiar and so I am beginning to worry less about the times when she won’t leave the home in the knowledge that a period of going out more is probably around the corner.
  • Requiring constant attention is another cycle that ebs and flows.  This is also linked in with her cycles of routine and her interests at any given time.  She will have periods of being glued to Netflix watching one episode after another completely entranced in her own little world.  Or playing Minecraft hour after hour while simultaneously listening to repeat episodes of previously viewed shows.  During these periods I can literally take my life in my own hands by merely asking the most innocuous of questions.  Then we can have periods of Mollie wanting and needing complete and total one on one interaction day and night.  The computer world appears to temporarily lose its appeal and human companionship becomes her immediate craving.

So Mollie’s life appears to be one cycle after another that ebb and flow in their intensity and their duration.  At one time I would try to stop or shorten what I deemed to be unhealthy cycles.  This used up time and energy but never delivered the desired results and even when I thought I had been successful in breaking an unhealthy cycle it simply returned a few weeks later.  The words head and brick wall spring to mind and the truth of the matter is that there is only one person who can change these cycles, when they begin, when they end and what they are replaced with and that person is Mollie.

So I have simply decided to remove an unnecessary workload and source of stress from my life and I have decided to just roll with it and take the cycles as and when they come, comfortable in the knowledge that they will chop and change and that Mollie can successfully monitor her own needs.   I no longer feel that I need to intervene unless she is putting either her own or anyone else’s health and safety at risk or if a negative cycle is indicative that she is either depressed or really struggling to cope.

Thank you for reading this post and for more information on PDA please visit  http://www.thepdaresource.com/

Hobson’s Choice

Humans are essentially social beings that are dependant on social interactions with each other in order to grow, thrive and develop.  Unfortunately, for Mollie, any amount of socializing or even engaging with the outside world has a very detrimental effect on her.  She really wants to be able to be like other children and go to school, play outside, have friends, go to parks and so on but the sad reality is that the side effects of such activities are so extreme that they simply outweigh the benefits.

I often question myself and have periods of doubt about if our alternative life really is the best option for Mollie long-term.  This is especially true when I find myself trying to either justify or explain to others why, for Mollie, socializing and interacting with peers really isn’t in her best interests.  I suppose that when you are in a position of continually justifying your lifestyle and your choices that it is only natural that you begin to question your own beliefs.

Then I began to look at things from a slightly different angle and thought of a new way to explain our unique situation for those who will undoubtedly question our choices in the future.  If a child is allergic to the sun and even the tiniest amounts of exposure to daylight causes her skin to blister then surely a sensible decision would be to not expose the child to daylight.  In time the child may become more tolerant to sunlight and so we don’t want to give up the idea completely but, just for now, she needs to be completely shielded from it due to the severity of the blistering and the long-term damage that could be caused to the skin.  Instead of insisting that the child continues to try to tolerate the sunlight whilst potentially causing irreplicable damage surely it is a far better option to help the child adjust their life around the difficulty and to become accepting of it.

Social exposure and the outside world in general is the equivalent of a hot sun that blisters and scars Mollie’s brain rather than her skin.  The searing heat of social exposure on her brain cannot be seen directly like blisters on the skin.  Here lies the huge difficulty that we, as her parents, experience when we are trying to explain our choices and our child’s difficulties to others.  There is no physical manifestation, the only symptoms of the damage that her brain is sustaining are behavioural ones.  This wrongly leads others to believe that the problem is not physical and that behaviour should be managed by discipline and management strategies.  These, of course, fail miserably and only serve to make the situation and the blisters on her brain worse.  Just like the child who is allergic to sunlight perhaps the child who is allergic to social exposure needs to be shielded from the very thing that is causing the damage and be helped to adjust to a different way of living.

I cannot discipline the behavioural side effects of social exposure out of Mollie anymore than I could discipline the child who is allergic to the sun to not have an allergic reaction.  So instead of trying to fix her and make her fit into a neurotypical world surely the best option is to adapt our world to hers.  Mollie’s brain is simply wired differently and so she requires a different environment and she needs to adapt and accept that environment rather than yearn after one that is inaccessible.

With any obvious physical impairment we automatically exude sympathy and make the necessary allowances.  We don’t expect rewards and punishments to help the child in the wheelchair to walk or the child with Cystic Fibrosis to run a marathon.  Instead we build on their strengths and accept and make allowance for their areas of difficulty.  Mollie’s brain is hard-wired differently than a neurotypical brain meaning that she can’t function socially without enduring huge anxiety and stress.  We need to make allowances for this and adapt her environment rather than insisting and forcing her to do things that she simply can’t, rather than wilfully won’t do.

I would love nothing more for Mollie to be able to enjoy all of the things that other children simply take for granted.  However, instead of focusing on a pipe dream it is far more beneficial to be pragmatic about the situation and to instead focus on providing her with a positive environment that she can thrive in.

So here is our Hobson’s choice.

  • Do we continue pursuing a social existence that is deemed healthy by others and suffer the consequences of that pursuit of normality.  The consequences are meltdowns, explosive rages, high anxiety, high stress, poor self-esteem, public embarrassment, self loathing, a family in crisis, a child who craves the normality that she simply can’t emulate and ultimately our walls will just come crashing down.  There are no benefits for either us or Mollie other than the approval of a society who wrongly assume that social exposure is so important and fail to understand that the price that we pay is far too high.  I have tried and tried to encourage Mollie to join activities and groups.  Just prior to Christmas she attended a few dance classes and performed in a show.  I was thrilled with her progress but it did come with a price tag.  The anxiety and stress endured getting her out of the house was no small feat and the build up to her show saw a return of really difficult and manic behaviour.  Following all of our efforts Mollie gave up the dance group and so it really was one step forward and two steps back and I am really questioning if the pursuit of social inclusion really is worth the time and effort when no long term benefit comes out of it.  Am I actually pursing social inclusion for Mollie because it really is the best thing for her or am I simply trying to seek approval from a society who deem social inclusion as a must without actually understanding the full picture?

OR

  • Do we stop trying to make or even encourage Mollie to join in this activity or that activity and to simply allow her to proceed at her own pace and in her own time.  To trust her to be able to judge and ascertain when and how much social exposure she can cope with.  The benefits for us and her are huge, she is very happy at the moment and appears to have come to terms with her alternative life.  No rules (other than health and safety), no demands, no school and limited social exposure have turned our daughter around.  She hasn’t had a meltdown for over a year, her self-esteem has massively improved, the family unit is far more settled and strong, my relationship with my daughter is the best that it has been during the last seven years and she is slowly starting to venture out a little bit more and she is more readily interacting with family members.  While the situation isn’t ideal it is, for us, far better than the alternative.

We chose to sacrifice social interaction and social exposure in order to attain mental well-being and a peaceful family unit.  Mollie has regular interaction with us her parents, brother, grandparents and her friend Ann (Ann is her Personal Assistant funded by direct payments from social services).  For now that is enough and anything else will be pursued at her own pace and in her own time.

There are no right or wrong answers in this situation.  Another family may pursue the social interaction and accompanying anxiety because they feel that it is important for their family unit and that the benefits, by far, outweigh the negatives.  Neither alternative is ideal and neither option has all of the answers.  For parents of children with PDA this really is Hobson’s Choice.  However, for our family, I truly believe that we have gone down the right path which has really been child led by Mollie.  We have put our trust in her and we achieve far more with her when we stay in the background and allow her to make her own decisions.  However I must stress that each child, family and situation is unique.  Another child with PDA may not suffer the same acute anxiety that Mollie experiences and for those children they may, with the correct support, cope better in school and socially than Mollie did.  You wouldn’t want to make a child that is capable of coping turn into a recluse.  For Mollie turning into a recluse appears to have been a necessary step in the healing process and is actually helping her to cope with short amounts of exposure at her own discretion.

So, I have decided to stop beating myself up about if I should be doing this, that or the other and to simply accept that we need to do what is right for us and our family.  We have to life it, we are in full possession of all of the facts, we see the full picture, we know our daughter inside out, we see the pluses and the negatives and so we are in the best position to judge what is healthy and what is damaging for her.  For Mollie, the pursuit of what others see as normal and therefore healthy and necessary for development is in-fact unhealthy and damaging for both her development and her mental well being.
 photo 5a00033b-1512-48e2-9905-225e82fe0ce8_zps6eff9b06.png

So, from now on I shall say with conviction and without apologies or explanations that we are simply living life ‘Mollie’s Way’!!

Follow

Get every new post delivered to your Inbox.

Join 154 other followers

%d bloggers like this: