We need to do better Doc. Catch up with Pathological Demand Avoidance syndrome and avoid the fallout.

Time-for-Change

I haven’t written in detail before now, of our experience within the mental health system here in Christchurch, New Zealand. The reason for this is because the trauma is still very raw for me and I am not ready to share. I also believe in shining light on the things I want and not what I don’t want.

However, today I received news of a friends experience of her first assessment meeting, here on my home turf, with her suspected PDA daughter who is just 10 years old.  I was so disturbed by the account that my friend gave me, that I find my fingers typing and my brain in need to shift my emotions onto my blog and beyond. Our story needs to be heard.

When a Mother takes the step to call out for help to the health providers, she does not take this on lightly. When a Mother has tried every method of traditional parenting and concluded that it is not helping or teaching her child. When a Mother has researched for a year and collated examples of why she thinks PDA explains the unusual nature of her child, or the uncontrollable anxiety behind closed doors, she is not looking for a reason to be excused from her unsuccessful parenting. She is not looking for attention or a label. She has put herself and her child in a vulnerable, exposing position and she is most likely feeling terrified of what lays ahead.

Today, a wonderful Mother, a trained early learning teacher and an all round, hard working, lovely, kind person was that Mother I describe above. She knew that she had to find a balance, a tiny opening in between being sized up in the first few moments of the interview, and the black hole of uncertainty that follows such a quest. She had one chance to get to the next level, and you know what, she left that interview having been stripped of her own self assurance and her daughters potential happy future.

In summary of the event, before I rant about what should be happening, I can tell you that this parent was clearly told, at this first meeting, that her parenting was to blame for the difficulties she described. “Rodger’ (name changed but it was equally as old and stupid sounding) had “Heard of PDA, but not come across it”. End of.

Oh! so no wonder Doctors aren’t coming across ‘it’ if they can’t get passed the first dinosaur at first port of call into the ‘system’.

As in many of my past experiences, when you are inexperienced in meetings for mental health issues and also in crisis point with you child, there is often a student or trainee present. Like they sneak in some training with those that most probably won’t make a fuss. No offence to young people, but do you know how degrading it is to have someone with no life experience sitting in and taking notes and nodding when their superior speaks down to you and brandishes you a hippie Mother. Like this coverage is going to somehow get you some beef in your knowledge and some grades or whatever.. Do you know how much damage you are actually doing for anyone who has finally got to their long awaited appointment with a child who says no to everything,  with high anxiety? Do you even really know what anxiety is? Have you lived it? Do you know what it feels like?

The assessor turned to his young trainee and said, “Oh yes, they go to Ao Tawhiti school, where the teachers are called “Learning Advisers. No wonder the children have no respect for authority and the parents are having trouble”. He then went on to recommend a parenting course for the family, a change of schools and a stricter routine. He actually said this! FYI Our school works on the principles that every child is free to be themselves. You might want to try that concept sometime Rodger, maybe step out of the institution and take a look around. (Yes sarcasm). Our children show respect because they are given respect, not forced to show respect when its not deserved. Come and take a look at our gorgeous kids Rodger, you might just re-adjust your views a bit afterwards when you see the creativity and genius’s of the future. What’s that Rodger? Far too busy ticking sheets? Shame.

It is at this point you will have to just imagine the words I want to say, and I’m sure my friend did too, but she was most likely in shock  and her brain in survival mode, looking for the nearest exit or the first opportunity to run away. I know I would have and that been in that situation and I am not the first and she is not the last.

What the hell is going on? In this day and age? REALLY??

REALLY???

Our PDA support pages are full of stories like this, from all over the world, many countries. But that’s the thing. They are not stories. They are real life happenings and it is the year 2018. Mental health systems are SO far behind and we are wondering why the suicide rates are so high? Why the Western world is in a mental health crisis epidemic. It makes my head spin, it really truly does. The internet has given us a gift, the gift of communication and education. Travel back to the 70’s and Mothers, like my own, had to just get on with things. They were isolated and starved of information. They relied on their GP for anything health related and they trusted the gurus of all things health to have their very best interest at heart. Fast forward 20 years of most homes having access to the internet and look how we have moved on. Now we can find others who are the same as us and we can talk to those others on a daily basis. I talk to my PDA family every day, more than my own friends and family if the truth be known. And we aren’t just making this up, we are not bad parents. The parents of PDA are astounding to me. We all share our research our discoveries of better ways to live and parent. We are the very opposite of bad parents, we are the best parents.

Rodger, don’t forget that some of us do have trouble communicating in face to face, intimidating interviews in stuffy offices with tiny windows and whiring plug in heaters in the corner. Scabby old sofas that 100 people have sat on that week. Old, sad energy filling the air. The last coat of paint, probably 10 years old, peeling away from the cracked wall.  The plastic, dead flowers with years of dust on them. The feeling that you are just another number to be discussed with a routine check list. Some of us don’t feel healthy and comfortable in this environment. And I wont even begin my appraisal of the hospital accommodation, heaven forbid anyone get to that point. My home is dressed with second hand treasures, that cost very little. It does not take a genius to make a comfortable environment with soft, natural light and clear fresh air. Just saying.

Not being educated on a condition that is real but has yet to be ‘proved’ real by those who spend years studying conditions of mind to determined how real it is and whether there are enough people of the same mind type to make it worthy of going into a big book called the DSM, is not a good enough excuse for turning people away that come through your door identifying with PDA. And breathe. And full stop. (You might tell I’m a tad annoyed) If people are not allowed/ able to be assessed for PDA, then how on Earth will we ever be taken seriously? There are thousands of us out here and the numbers are rising every single day as people hop on and have light bulb moments because we are talking. Eventually you will have to listen because we will out number you and we will join forces. We are joining forces.

My daughter was 10 years old when I first sought answers. Autism was not picked up. We hit enough criteria with OCD aswell to get through to the next round and into the ADOS test (Standard autism testing) But PDA was never going to picked up because PDA autism presents in different ways, the signs and clues don’t tick the boxes. So, here are some signs to look for when first hearing the words I think my daughter is PDA.

  1. The child might appear despondent.
  2.  The child might be talking quickly or off topic, maybe its about their special interest or maybe they only engage when you ask them what they like.
  3. The child might be refusing to answer your questions or hiding behind Mum’s leg.
  4. The child might be doing things to swing conversations away from what is being said.
  5. The child might be withdrawn or over stimulated and showing signs of high anxiety.
  6. They might snap if something is said that’s not true.
  7. They will probably be behaving well because they are scared and they will explode when they are home again.
  8. The Parents will feel on their back foot, but they MUST be listened to.

Now, I can’t say for sure whether my own daughters breakdown would have been avoided if we had discovered PDA back when we first entered the system. It was 2 years later that we found our answers which were due to my persistence and a long lonely journey. We had to find the money to find the answers we needed. This should not be so. By the time our wheels well and truly fell off, hormones and self awareness had begun and the window for intervention had closed. I think that if PDA can be found before the age of 10, we can save a lot of harm in the future, and for those who only think in the terms of money, not actual people, that’s probably going to be quite a few pennies.

I now want to turn this blog around. Spotlighting a venture that has come to my attention in the past few weeks. The funny thing is that about a year ago, I completed a questionnaire about our experience within the mental health system here in Christchurch New Zealand. We (Christchurch) are in the news a lot because our city underwent a devastating earthquake coming up 8 years ago, the result was a lot of anxious people and some suffering from PTSD. Mental health in general is a big issue here, more so because of the trauma we all endured. We know that our services are totally inadequate and stories of woe are frequently in the press. Over worked staff, the top Docs in burn out, the funds not touching what we need. It’s not unusual to hear a sad story, it’s the norm. So I was keen to jot down my ideas of a better Christchurch and my visions of a place of health a well being. I’m good at dreaming up how things should be.

Anyway, coincidently, the very vision I dreamed is coming into reality and I want to share a link with you to it’s website. If you have any time to take a look though the concept, and are anyone that could take this idea for your own community, then it’s well worth a look. This is what we need to get to, not the experience that I have told you about today, which, sadly is one that I read on a daily basis on the forums where we Mothers gather to help sooth the damage that these idiots are doing out there.

https://www.tumanakowellness.com/

Holistic & Sustainable

  • a centre providing values based psychiatric and psychological care while treating patients as guests
  • the centre is focused on providing services that enable emotional, mental and physical wellness
  • the building design and operational model will be environmentally, socially and financially sustainable

Nurturing & Inclusive

  • the centre will provide compassionate care that acknowledges and values clients, family and their caring communities/support networks
  • the centre will grow and provide nourishing food and offer complementary therapies (yoga/mindfulness/massage/acupuncture/reiki/naturopathy/gardening, art and music therapy)

Inspired by Nature

  • the centre will be a modern, architecturally designed, calm, green, nature filled sanctuary
  • the centre will be a place of healing where the environment contributes to our guests’ wellbeing
  • harnessing nature to nurture our guests through the use of functional foods and micronutrients

Driven by Research

  • the centre will be a place of knowledge production
  • the centre will have an inspirational workforce that attracts the best minds, clinicians and practitioners

Technologically Innovative

  • the centre will use cutting edge technology to advance the model of mental health care
  • technology will be used to treat, connect and educate our communities

(Taken from the website)

I’ve covered a lot today and I know our story is one of many repeat stories. That does not make it OK. It’s time for change.

If you are new to PDA and are considering going out there to seek help or confirmation, then my advise is to prepare yourself. Gather information and examples of your child’s behaviors and see if you can find an advocate to come with you for your meetings. My friends experience yesterday is a reminder that you may come face to face with someone who is weeding through new comers and sifting people off into baskets. Meaning he will have his tick sheet and he will be deciding where to put you. Which basket. I imagine they would be labeled, No chance, next round, basket case and so on. They are motivated by rules, targets and money. They are often de sensitized to individual emotions. They often don’t give a shit.

Find the balance between pushy parent, victim parent and bad parent. You want to be aiming for no nonsense parent. It’s very sad that the severe cases get through, ie the ones that buzz key words like violence, school refusal, suicide, self harm. Those who haven’t got to that stage yet, that could be saved, are not being saved they are being turned away. Things need to change and we are the change makers. I’d better round up this passionate post and get on with my work. Thanks for reading.

Imagine a new way forward and it will come. x

 

 

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10 thoughts on “We need to do better Doc. Catch up with Pathological Demand Avoidance syndrome and avoid the fallout.

  1. ‘Roger’ (name changed but was equally as old and stupid sounding)” 😂 thanks Mel, I needed a laugh, you have certainly been a light in this whole sorry saga! I have a feeling that all your passion , skills and experiences, both positive and negative will accumulate into something truely special and I love the glimmer of hope that you share at the end of your ‘rant’ . Like you, I believe things happen for a reason and feel like that is becoming clearer. Thanks for your unwavering support and empathy, it really is what gets me through sometimes xxx

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  2. I came across PDA and said, “Oh my gosh – that is my daughter!” So I took the information to my daughter’s therapist who had already diagnosed my daughter with autism. She had never heard of PDA and when I was explaining PDA in terms of my daughter I got thrown the “Sounds more like Oppositional Defiant Disorder.” And she wouldn’t talk about it again. So, I don’t say Cate (my daughter) has PDA. Although I think she does. So I just sit as the frustrated parent and listen to “No” a thousand times a day.

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    1. HI Robyn. Yes, ODD is very often confused with PDA. However, the strategies used for both separate conditions are very different. There is quite a bit of info re the differences between the two conditions. I might see if I can put something together as I have not covered this topic before. Thank you for your message . One lives in hope that PDA can be fully understood by all people some day soon.

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    2. My son is Dx ASD, ODD , anxiety and depression. I also brought forward the PDA Dx to attention and was met with a head tilt (🙄). You know the “oh, your the mom face”. Then I present the research binder (💁🏻) and offer for them to look through the writings of professionals whom have published research. Which is met with this 😳. So I finish with….” over in Europe it is a recognized Dx. It will be here in the coming months. You kind of how the whole ASD Dx has evolved. 😁

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      1. Yes the head tilt and the eye roll, or the bum shuffle. Wish they could be transported into our heads for a while and see whats going on. We should not have to prove our parenting before we are given a fair assessment for ASD. Sigh. Anyway, keep using the PDA strategies and the things that work. Good luck. Thanks for reading my blog. x

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      2. I know! I wanted to give my daughters therapist the info, but I backed off when I TOTALLY got the “Oh, your the mom” face. I am anxious for it to get here, which I agree – has to be soon! 🙂

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  3. This could have easily been written about our experience entering into the world of our local mental health “experts”, both myself and my daughter are still traumatised by it. Unfortunately it has left my daughter very untrusting of so called health professionals and reluctant to see anyone else. Thank you for this, things have got to change for the better and it will only happen by raising awareness!

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    1. HI Louise, trust is the absolute first thing that needs to be established, and it so rarely is. I now go to appointments on my own to ‘check out’ who we are seeing and explain PDA before my daughter agrees to see anyone new. She trusts me thank goodness. x

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