Don’t say NO! Our experiences with PDA 


Last year I wrote 2 posts on PDA (Pathological Demand Aviodance,) 

https://sensorysensitivemummy2.wordpress.com/2016/06/26/pathological-demand-avoidance-pda

And: 

https://sensorysensitivemummy2.wordpress.com/2016/06/26/pda-part-2/

Both of which explain the main features or ‘traits’ of PDA, so for PDA Action day (15/05/17) I decided to share how PDA looks in our household. 

Avoiding negative phrases and ‘demands.’ 

The worst response I can give when my daughter, Lou (5) asks me a question is “No.” In our household saying “No” outright usually results in objects being thrown, shouting, screaming, hitting, kicking and could result in a total meltdown. 

From researching PDA over the past year, I realise how important it is to think carefully about how we word every phrase for our daughter, it’s taken so long to get used to and you have be quick-thinking and very often think ‘outside the box.’ Lou has a lot of obsessions around food, she repeatedly states to us that she’s hungry, she never feels full. If Lou asks for something to eat and she’s already had plenty to eat only minutes before, we simply cannot reply “No,” nor “not now,” as I discussed previously, this will result in a great deal of anger and frustration and things get thrown! We have to use a visual chart where we point to the meal and time of day, Lou removes the snack card and we point to the next meal, e.g lunch and say: “next time we have food is lunchtime.” We use minimal language and often have to repeat the same words to aid her understanding. Not saying “No” is a very difficult thing to do! Having to think of what to say before you say it every time takes a great deal of my ‘brain energy!’ 

Lou will avoid any demand put onto her, getting her dressed in the mornings often takes both myself and her Daddy, we cannot simply say “get dressed,” as the answer will always be “no,” or she will shout replies back such as: “No you silly Poo,” or “you’re a really silly woman,” she has even told me: “You’re an awful Mother,” (I have no idea where she’s heard this phrase!) It took me a while to get used to these ‘come-backs,’ but I do have to let these ‘outbursts’ go over the top of my head to avoid ‘fuelling her fire’ even more. We have to use choices for absolutely everything: 

“Trousers or T-Shirt” this often still results in “No, I’m not getting dressed today,” when we have to give the choice of: 

“You do it or Mummy/Daddy do it.”

It can often take over 30 mins for Lou to be fully dressed as she also likes to run around the house to see if we can catch her to get dressed! 

This is also the same when it comes to tidying up, we have to give a lot of praise when Lou does tidy up and in the last month I can only remember this happening once, we’ve modelling tidying, but the demand of doing it is just too much for Lou to cope with. We use visuals and ‘Sign-a-Long’ for ‘tidying,’ and other daily routines. These sometimes work with Lou, but also sometimes don’t! We also have to be careful with wording and giving praise as Lou doesn’t cope very well with actually receiving praise, will not know how to handle it and often do something like throw all of the toys around the room in response. 

Lou struggles with sudden or unexpected changes to her routine, even as an adult I am exactly the same! We recently had to leave our holiday 3 days early as Lou had got chicken pox, we had to get the train home 3 days early and we’d planned to take both girls to a theme park for the day, we had previously prepared Lou for this day out with talking through it and visuals of what would happen. When we had to tell her that she couldn’t go to the theme park as she had chicken pox it was like a volcano had erupted! Lou shouted all the way walking to the train station, “adventure park Mummy,” and repeated it and then would say things such as “this place is stupid,” “silly train, silly place.” She also refused to move and sat on the pavement in the middle of the town, in protest! This made me so disappointed for Lou, and the change in the plans had set me off and therefore Lou’s Daddy had to deal with us both all the way to the train station! It took both myself and Lou a good hour or so to finally calm down and adapt to the changes. 

I find it confusing as to how Lou cannot process demands yet she places a lot of demands onto myself as her mother and main care giver, and also her dad. She will say things like “get my snack now,” “I said get me it NOW.” I found this difficult to cope with at first but after reading up on PDA I realise that: 

“People with Pathological Demand Avoidance (PDA) will avoid demands made by others, due to their high anxiety levels when they feel that they are not in control.” 

Source: http://www.pdasociety.org.uk/what-is-PDA/about-pda

I hadn’t pieced together that the anger and frustration I see in Lou is actually all down to anxiety and this manifests more when she doesn’t feel in control of situations. 

There are so many more things I could say about PDA, I’m still learning more every day. It’s exhausting and I feel it’s quite catastrophic, but what we have to do is take positive steps to ensure that our daughter is helped to cope in the best way possible. 

My hope is that PDA does become more widely recognised as I hear so many different experiences where PDA is recognised in certain counties in the UK and yet in others professionals refuse to recognise it. 

PDA certainly does exist, and we live it everyday! 
Brilliant sources of information on PDA: 

The PDA Society – http://www.pdasociety.org.uk/

The PDA Society has created the PDA Panda ambassador for PDA Action day on 15th May 2017. You can read more about it here: 

http://www.pdasociety.org.uk/blog/2017/05/pda-panda-ambassador

Steph’s Two Girls: Steph is a fellow SEND blogger 

http://www.stephstwogirls.co.uk/?m=1

PDA Hearts and Stars: 

https://www.facebook.com/PDAHeartsAndStars/

Riko’s PDA Page: 

https://www.facebook.com/RikosPDApage1/

Sally Cat’s PDA Page: 

https://www.facebook.com/SallyCatPDA/

PDA Soapbox: 

https://www.facebook.com/pdasoapbox/

Love PDA: 

https://lovepda.wordpress.com/

Life with ASD and the Rest:

http://www.lifewithasdandtherest.net/?m=1

Advocate4PDA: 

https://advocate4pda.wordpress.com/

2nd Post for Maternal Mental Health Week ~ My Experiences of Anxiety 


This post was written last year, I’ve added some details for Maternal Mental Health Awareness. 

Anxiety has been with me since I can remember, I started biting my nails at 3 years old and can clearly remember points in my childhood where I feel most stressed about certain things, down to even my first days at starting a new school, even the smells and sounds I experienced and how nervous it made me feel. I have always tried to be everyone’s friend to keep everyone happy and to avoid disagreements and confrontations, but over the years this has become increasingly harder to do, since I’ve had children I’ve had to become braver to say what I think and really feel, especially if its related to their safety or best interests. 
The real me is very hard to get along with! I’ve had, for the first time in my life, had experiences in the past year where people have clearly expressed that they don’t like me, or what I believe in and this has been very difficult for me to accept, for the first time in my life I have been called “nasty.” My anxiety is made worse by the thought that people are talking about me behind my back and making disapproving comments. I wish I just simply didn’t care! I often find that people do not openly ask me about why I choose to do certain actions, often ending in them making the wrong assumptions and not receiving the clear picture. I’ve always described myself as a ‘pushover’ and if someone said “jump” I’d say “how high?!” I have always been easy to influence and manipulate. I’d go along with things and agree, even if deep down, I didn’t truly feel that it was necessarily a good thing to do. And these weren’t only small decisions, I’m talking about extremely important, life changing decisions. For the first time in my life I’ve had to make decisions without outside influences and therefore if these decisions turn out to be the wrong ones, I only have myself to blame! 

Since my second child was born in March 2015, my anxiety heightened, I was recovering from a caesarean section and living in a first floor flat at the time, I struggled to get down the stairs to the flat with a newborn in a car seat and a very lively 3-year-old who frequently ran off. Plus my eldest daughter felt deep jealously towards her new baby sister even before she was born. I was dealing with a lot of emotions after having a new baby and sleep-less nights again and at the same time battling for my daughter’s additional needs to be recognised. I was encouraged to go and seek advice from my GP in April 2015 and it took until August to actually find the time to go and see the GP on my own. I was then placed on medication to help with the anxiety.  

I’m always saying that I feel that I should be able to cope better with my daughter’s additional needs, especially the behaviour she displays, there are plenty of parents out there who are coping far better, but this is me, and unfortunately, I do have a lower coping threshold than some. I am often saying that “this is me, I simply cannot change who I am” unfortunately I can’t wave a magic wand and make myself cope with things better. 

I have been so grateful to recently talk to someone else, that for the first time in my life, that feels the same as I do. It was a massive relief to talk to someone who can understand what I’m going through. 
With my current anxiety demons to fight, I want to explain why anxiety isn’t my friend! 
Anxiety you’re not my friend… 

– You make me worry about absolutely everything, even the smallest things. 
– You make my chest tight and I feel so helpless and it’s difficult to make things better. 
– You make me paranoid, that people are dissing me behind my back. 
– You make me over-think and over-analyse everything and everything! 
– You make me focus on one thing and it’s difficult for me to think about anything else. 
– You make me worry about going into public places, especially if someone is there that doesn’t like me! 
– You make me on edge and my daughter plays on that as she’s so hypersensitive to my mood. 
– You make me sick of the sound of my own voice. 
– You make me question my every action. 

– You make me feel that I always get things wrong, 

– You even make me feel like I’m a bad mum. 

– Sometimes you make me feel claustrophobic in my own home, other times you make me feel like I can’t even go out and even the school runs a struggle.  

Anxiety, you’ve been there throughout most of my life… 

To this day you are still ‘hanging around’

… you’re definitely not my friend! 

But…

… there is a light at the end of the tunnel, 

If I talk about it and don’t bottle it up! 

N. Perrins. 


This time last year my GP referred me to the ‘Worcestershire Healthy Minds.’ 

Worcestershire Healthy Minds supports people, aged 16 and over, who are experiencing problems such as stress, anxiety, low mood and depression.”

http://www.hacw.nhs.uk/our-services/healthy-minds

Here I completed a questionnaire and then a follow-up phone call where I was matched with the appropriate service to help support the issues at that time. 

Recently I have used the online service for self-referral to this service, where it may be reading support guides, counselling or Cognitive Behaviour Therapy (CBT.) It helps to talk to someone who isn’t involved with the family or the situation. 

There was once a time where I didn’t discuss these type of things, I felt ashamed and alone and that I was at fault. I have come to realise, especially over the last year, that it’s necessary to talk about mental health and to #endthestigma 
Thanks for reading 🙂 

Spectrum Sunday

My birth trauma experience ~ written for Maternal Mental Health week ~ 1st – 7th May 2017. 

My birth trauma experience 


My eldest daughter was born in the spring of 2012, I had a fairly normal pregnancy and was still able to work full time with children, the job that I’d done for 8 years. We were excited as first time parents, and moved into a new family house complete with a nursery and a whole heap of equipment, toys and clothes ready for the babies’ arrival. I had prepared myself for a natural birth, being a naturally anxious person for the whole of my life, I found the technique of ‘Hypnobirthing’ very beneficial by reading the books and listening to the CDs. 

At 4am my water’s broke, I was calm and collected and I took everything in my stride. But then there was a problem, panic set in after building myself up to stay calm, I called my local hospital’s maternity triage department and I was told to “come straight here.” When arriving at the hospital there wasn’t too much of a panic and my labour was induced. This was a slow process and I was monitored very closely as the midwives were concerned about the baby’s heart rate, I was told that she had “Meconium in her waters.” After several pain killing methods I started to feel like this experience wasn’t happening to me, it was like I was on the celling, looking down on someone who was going through it all. I remember a yellow piece of paper and the words: “We need to deliver this baby right now,” then all I remember is the lights of the corridor as I was transported into surgery. My baby’s heart rate had reached a dangerously low level.  

I don’t remember a lot else at this point, except trying not to cry with the relief that she was here safely, and the relief that I felt once she let out that all important first cry! I struggled to contain my laughter when the surgeon urged me not to cry as he was completing the stiches after the C-Section, and as he said “Whoa Mamma” it made me chuckle and I moved more! I tried to contain a mixture of happy tears and laughter due to the situation. After the drama died down I was left looking very swollen from all of the painkillers and various drugs from the operation, I found the nights horrendous as I was in so much pain and the ward was very noisy at night, as I was used to sleeping in silence at home! I remember getting very upset and uncontrollably crying on the second night as I’d asked for assistance to help change my baby’s nappy and help didn’t surface for hours, once someone did arrive I got it in the neck and was ‘told off’ because the nappy had been left too long! All I could do was to protest was that I had been asking for help for a number of hours but nobody came, needless to say I was extremely relieved the next day when I was allowed to take her home to the comfort of our own house. I found that she would settle to sleep better if she was swaddled tightly in a blanket. 

Just 2 week’s under 3 years since the birth of my first child, my second daughter was born. I did have it always in my mind regarding the trauma of my first birth, I had a lot of motoring and scans the second time around as I had a anterior and low lying placenta. When I was given the option of trying for a natural birth with a low-lying placenta I thought back again to the trauma from the first time, I decided that I simply couldn’t go through another emergency caesarean if it got to that point and re-live the experience again and therefore I opted for a planned caesarean the 2nd time around. Which was a very straightforward and very well planned procedure and I found that my recovery time was better the second time around as I did know what to expect in terms of the length of recovery time and what I could and couldn’t do.  


Thanks for reading 🙂 

www.birthtraumatrust.org

The Birth Trauma Trust aims to raise awareness of birth trauma, its link to perinatal wellbeing and mental health and how women are cared for, they also have a Facebook page: 

https://www.facebook.com/birthtraumatrust/