I would like to dedicate this post to Katie Hopkins and all of the other narrow-minded, ignorant, uncaring, hurtful and judgmental people who reside in the outside world. It is opinions like these from the ignorant and the uneducated whom see fit to make judgments on subjects that they know nothing about that have caused me and my daughter so much damage.
In order to protect myself from this type of ignorance and to prevent anymore of my self-esteem and confidence being eaten away I, like Mollie, live in a world within a world. The over inflated ego that is ‘Katie Hopkins’ has yet again deemed it fit to share her preposterous and antiquated opinions with the world. Usually the utter clap trap that she comes out with is laughed at and frowned upon by the majority of the nation but unfortunately the topic that she has recently graced us with and her outdated opinions are ones that are sadly shared by many. If the neurological expert that is ‘Miss Hopkins’ can’t get her head around ASD or ADHD, God help us all if she ever hears about PDA!!
A few years ago I along with Margo Duncan did an article on PDA for ‘The Times’ newspaper. The ‘Daily Mail’ then did an article which took the section from ‘The Times’ article that basically explained PDA but left out the bits by Margo and I. The replies from readers were cruel beyond belief and it took me a long, long time to recover from the abusive comments that were directed towards the parents of children with PDA.
Please click on the link below for the original article from ‘The Times’
The comments from the ignorant in the links below are disappointing and sad but more importantly it shows just how dangerous ignorance can be for the parents, the children and the adults who do have PDA, ADHD or Autism. We did have a bit of a counter attack from PDA parents in the Daily Mail comments and I am rather proud of hubbie’s efforts, second comment down from the top. Please do not read the comments if you are likely to be upset by them.
- Contrary to a common theme that runs through the minds of the ignorant I receive no benefits from the system other than DLA for Mollie.
- My husband runs his own business and pays taxes.
- The businesses that I used to part own are now run by my sister and these businesses also generate a lot of money for the tax man.
- I gave up work over three years ago to look after my daughter while she was out of school because she is my responsibility.
- I have been home educating since Easter this year and I plan to continue doing so which means that my child will not be costing the local authority a penny unless they chose to contribute.
- I receive 7 hours a week respite from Social Services to enable me to not go stark raving mad and to continue caring for Mollie.
- In short I have been to hell and back and completely given up my own life to take care of my daughter rather than to shirk my responsibilities.
- Now that she is being home educated My daughter costs the system less than a typically developing child.
- I have educated myself on autism and pda to such a level that I could possibly teach most professionals a thing or too because I have been completely neglected by the very professionals who should have been supporting me.
So on to my post entitled ‘A world Within A World Is Where My Daughter and I Reside’. Hopefully it shall become clear as to why I have dedicated this post to Katie Hopkins and those who are, like her, too opinionated and too vocal on subjects that they know nothing about. Unfortunately when it comes to PDA this ignorance also extends to many professionals who continue to bury their heads in the sand and deny the existence of PDA.
A world Within A World Is Where My Daughter and I Reside
It is ironic that the environment that Mollie so desperately needs for the optimum chance of calmness and tranquility is now also the one that I need as well. We both live in our own manufactured world within the greater world where the rest of humanity mingle, work and socialize. Occasionally we dip into that wider world and pay a visit but without our inner sanctum of home and the security that it brings we are both crippled by anxiety and soon begin to overload.
Mollie cannot cope with the outside world because it is just too much of everything for her differently wired brain to cope with. She quickly becomes over stimulated by situations, events, noises and colours which sends her brain into absolute overload with circuits firing off right, left and center. The result is erratic and impulsive behaviour that reaches a very manic and uncontrollable level.
On top of that the social world of communication and interaction is confusing, baffling and scary. So many people all behaving differently, reacting differently, expecting different things, no sense of being a child, no natural sense of her place in the world, no understanding of the natural pecking order, why are adults in charge, why do they boss me about, why can’t I have control of my own life and decisions. She needs to uniform everyone so that the confusion and unpredictability dissipates. This is achieved by controlling everyone and everything in her environment, this is her coping mechanism to prevent the impeding system overload because it provides her with stability and predictability.
The more people that she has to deal with and the more exposure to external stimulation that she experiences results in an increase in the level of impulsive, unpredictable and controlling behaviour. The more she controls and goes into overload the more the normal world try to correct her behaviour, hold on to their control and reprimand her for her uncontrollable outbursts. BOOM !! the meltdown has arrived her computer completely crashes and a destroyed child lies in the rubble. When this process continues year after year the damage to the child may become irreversible and even when all of the external anxieties are removed it may take years to turn around and restore the child’s emotional well-being.
All children with PDA will have different tolerance levels and will also be able to function within the outside world to varying levels. Some may be able to cope with more than Mollie can and others may be able to cope with less. The environment that any parent provides for their PDA child is a deeply personal one that is fine tuned to their child because they know their child best.
Mollie just cannot cope with the outside world and removing her from it has transformed all of our life’s. She now lives calmly and happily within her own world where everything is provided and maintained at a level that her brain can cope with without going into overload. The outside world is still there and she is free to dip in and out of it as often and as long as she wants to. Hopefully the calmer world that we have provided will enable her to dip in and out for slightly longer periods without her anxieties becoming to high and leading to meltdowns when she is having a dabble in the great big world.
If you leave a child in the sun too long without any protection they will quickly burn, even with sun-cream their skin will only be protected from the rays of the sun for a limited period of time.
If I leave Mollie to continually try to function in the outside world her brain burns and even with the protection that I can offer her, as her portable bubble, her brain can only be protected from the outside world for a period of time before it begins to burn again.
The ignorance of others has not been wasted on me because I can now view it as a positive. It is that very ignorance that has helped me relate to Mollie and why she feels a need to shield herself from the outside world. For Mollie her inability to cope with an over stimulating environment and her inability to function calmly when she is surrounded by too many people means that home is the best place for her where here environment can be adjusted to suit her mood and tolerance. For me the years of dealing with Mollie have, of course, played a huge part in my mental health but I truly believe that it is the years of being unfairly judged, talked about and commented on by others that have resulted in me limiting my socializing to my nearest and dearest only and accounts for the huge difficulties that I now have with ‘Social Anxiety’.
I can really relate to how Mollie feels because whilst I don’t have her difficulties I do find that, to a much lesser degree than Mollie, I have to carefully chose what I can and cannot manage in the outside world. I find socializing with and relating to other people very difficult because my life is so far removed and so different from anyone that I know. My nerves are constantly on edge and any amount of responsibility or even simple requests from others can really tip me over the edge and propel me into a state of panic.
In order to prevent the above from happening I have gradually without my even realizing it become, just like Mollie, only truly comfortable within my own skin when I am in the company of my nearest and dearest or online with my PDA family. I don’t have any problems with going out and doing things like Mollie does but I only want to share those experiences with my nearest and dearest and find the thought of socializing with people who are not from that exclusive group as extremely daunting and stressful.
I am constantly worried about saying the wrong thing, upsetting somebody, letting somebody down, being judged, doing something wrong, making a mistake and so on, in short I have no confidence and I am consumed by anxiety. To make matters worse if I do commit one of these sins then I spend days if not weeks going over and over the event in my head and beating myself up for it. As a child and as an adult these were things that never bothered me one little bit, in fact I was quite the opposite.
I can’t pinpoint exactly when or at what stage of my life I became a people pleaser or began suffering with these terrible insecurities. I think that it perhaps started off when my son was a toddler and I was at a loss as to how to deal with his explosive, rigid and hyperactive behaviour. He would have regular meltdowns in public but he managed to mostly fly under the radar at school. We would often be the source of much entertainment for random passer bys when we were out and about. You need to be stricter, more consistent, give him to me for a week are just a few of the comments that I received during these years. I sought help from the health authority on several occasions but I was told on more than one occasion that his behaviour was as a result of my parenting and no one would listen to me or take me seriously.
For the record he is now, due to my parenting and research, a very well adjusted, polite, well behaved and loving young man. It was by gut instinct, intuition, careful nurturing, un-conditional love and sheer determination that this was achieved. He was eleven when I first suspected ‘Asperger’s, which I was researching as this had been highlighted as a possibility for Mollie, it took three years before we finally had a diagnosis. My years trying to reach him and understand him could have been made so much easier if I had been listened to when I had first started approached the medical experts with him when he was only two.
Instead I was just passed off as a neurotic mother and at the time I truly felt like the worst mother on the planet and put my inability to cope with him down to me just not being very good at parenting or a natural mother. I felt a failure compared to my friends who had all appeared to fall into motherhood naturally and who did not have the issues with their children as I had with my son. Perhaps this is when my phobia of how other people viewed me began and then I experienced the same thing with Mollie but on a much higher level.
To fight for my children, their needs and our needs as a family I have had to fight like a pit bull with various agencies and local authorities. I know that one particular department view me as some sort of crazy, label grabbing not to mention possibly Munchausen by proxy mother. People look at me as if I am completely loopy when I try to explain PDA and you just know exactly what they are thinking, MMmm just a naughty kid whose mum can’t control her, give me a week and I’d soon have her sorted. The tutting and judgmental looks when she has meltdowns in public. Even though public meltdowns are now rare Mollie’s difficulty with her communication and interaction skills are more evident as she has got older. She will often make really rude or inappropriate comments and you can just see that people are waiting for me to reprimand her and wondering why I don’t. Again I know that they are judging me and explaining that I don’t correct her because this is just how Mollie is and that correcting her would only make matters worse only seems to strengthen their original analysis.
Socializing in the outside world with people who don’t understand and appear to be happier to silently judge than to actually try to believe me or to empathize provokes a variety of reactions within me. Anger, sadness, frustration, anxiety and sheer intolerance of the ignorance of others who feel that they have a right to voice their opinions on topics that they know nothing about. Reading and hearing the horrible and hugely inaccurate comments and opinions that so many people have about parents like me really does make you feel terribly alone and horribly misjudged.
With this in mind is it any surprise that for both Mollie and I that a life in a world within a world is a better place to live for all concerned. The neurotypical world isn’t ready for our world yet and until it is we need to preserve our emotional well-being by staying in ours. Instead of Mollie and I trying to unsuccessfully fit in with them perhaps they need to offer us a little bit of empathy, flexibility, tolerance, understanding and acknowledgment that not everyone’s brain will develop within the womb to their exact and acceptable standards. For those children and adults whose brains are wired differently no amount of behavioural therapy, strategies, discipline or anything else will turn them into societies perceived ideal of ‘The Norm’.
Think before you speak about things that you are not knowledgeable enough to comment on and remember that people can be deeply affected by harsh, ignorant and ill thought out comments. Don’t judge others until you have walked in their shoes!!
Please click on the following link for more information about PDA