Friday, May 20, 2016

Published Friday, May 20, 2016 by

Maintaining my mental health & relationships


Imagine ....

Your Son was diagnosed with autism a month ago by a child psychiatrist. You are trying to find out what autism is (and isn’t), you are chasing to get appointments with the paediatrician as well as several other therapists whose opinion you need (Occupational, Speech & Language, Educational).

With 2 weeks to submit your parental views to convince the LA that your Son needs an EHC needs assessment, you have been called into school for the third time in a month to discuss his challenging behaviour. They want you to agree to a reduced time-table which you can't support as you both work (it’s not illegal as they are an independent school), and they believe you are “lucky” they are being “nice” and not talking about exclusion. 

Then you get a work email that you need to migrate your email. What do you mean I need to migrate my email? Cue breakdown. 

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Sunday, May 15, 2016

Published Sunday, May 15, 2016 by

Community Support & PDA awareness

pathological demand avoidance - the importance of support for parents

What an amazing week this has been for us. It was PDA Awareness Day which I supported with a coffee, cake and chat day along with raising awareness via my blog and social media.

There was a definite increase in PDA related posts and tweets online during the week, and I have had many conversations explaining what PDA is (and what it isn't). I am so excited to see this happening as it means that awareness is growing - I do hope that soon we will see PDA being recognised in the diagnostic criteria

On a more personal level, this week was all about community and connecting with the support communities around me.

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Tuesday, May 10, 2016

Published Tuesday, May 10, 2016 by

PDA Awareness Day - 15 May

PDA day raising awareness pathological demand avoidance

It is just over a year since we were told that our Son, then aged 5, has Pathological Demand Avoidance (PDA) – which is characterised by the need to resist everyday demands due to an underlying anxiety of not being in control.

Since then he has been moved on from 2 schools, asked to leave his child-minder and his only friends have been the teaching assistants at school as he was kept isolated from the other children at school as his behaviour was too unpredictable and he would frequently lash out at his peers.

At home we have had some epic meltdowns – which can last for hours. Looking around the house you can see the scars that these have left – the curtains pulled down in our stairs, the series of broken TV remotes and night lights, the ripped up books/ magazines / paper, the shattered vases & scented candles, the family portrait no longer hanging on the wall.

Despite this I think we have been incredibly lucky.

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Saturday, May 07, 2016

Published Saturday, May 07, 2016 by

Trying to get things done with Pathological Demand Avoidance (PDA)

demand avoidance parent strategic get things done


Can you imagine trying to get two kids under 7 out of bed, dressed, fed and ready to head out of the house without ever asking or telling them to do any of these things? 

This is a challenge that we face every time we want to head out as a family (in fact pretty much any time we want our Son to anything). 

For our Son, aged 6, who has a form of autism known as Pathological Demand Avoidance (PDA), the simplest everyday requests can lead to anxiety and resistance. The more you insist, the more he will resist. 

This means we've had to think of ways to get him to do things, without specifically telling or asking him. 

Over the past year we have tried many techniques, with varying degrees of success (and frustration) - the most effective of these has been the phrase "Last one to the car gets the rotten face paint".

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